The following summaries highlight key findings from research posters presented at the EHA congress 2026, showcasing new developments in acute myeloid leukemia (AML).

All abstracts can be accessed here –> EHA2026 Abstracts

6 studies explained : What the New AML Research Means for Patients

A Quick Word Before You Read

This summary translates six scientific studies presented at the European Hematology Association (EHA) 2026 Congress into everyday language. It is not medical advice. Every patient’s situation is different — please always talk to your own doctor before making any decisions about your treatment.

Study 1: OPTI-AML – How Long Should Venetoclax Be Given?

Who is this for? Older patients (60+) with newly diagnosed AML who cannot tolerate intensive chemotherapy — for example, due to age or other health conditions.

What did the study ask?

The standard treatment for this group combines two drugs: azacitidine and venetoclax. The question was simple: does venetoclax need to be given for the full 28 days of each cycle, or is 14 days enough?

What did they find?

• The 28-day schedule worked better overall: more patients went into full remission (no detectable leukemia in the bone marrow) — 49% vs. 43%.
• However, the difference was not large enough to statistically prove the 14-day schedule is clearly inferior. The study was designed to answer that question definitively, and it couldn’t.
• Patients with specific gene mutations (NPM1 or IDH1/2) did noticeably better with 28 days (61% vs. 42% remission with NPM1).
• The depth of remission (whether tiny amounts of leukemia cells remained undetectable) was equally good in both groups.
• A practical problem: only 68% of patients in the 28-day group actually completed the full course, mainly because infections interrupted treatment.

What does this mean for patients? The 28-day schedule remains the standard — but it is harder to complete. For patients with an NPM1 or IDH1/2 mutation, the longer schedule appears especially important. For patients and doctors considering shortening treatment due to side effects, this study suggests caution: the shorter version has not been proven to be equally effective.

Patient perspective: This study is reassuring in one way — the deep response rates (MRD negativity) were similar between both groups, which is the thing that matters most for long-term outcomes. But it also highlights a real challenge: getting through the full 28 days is tough, and infections are a major obstacle. Better infection prevention and management during treatment will be key.

Study 2: KOMET-007 – A New Drug (Ziftomenib) Added to Standard Chemo

Who is this for? Younger or fitter adults (18+) with newly diagnosed AML and either an NPM1 mutation or a KMT2A rearrangement, who are fit enough for intensive chemotherapy.

What is Ziftomenib?

Ziftomenib is a targeted drug called a menin inhibitor. It blocks a protein (menin) that helps leukemia cells grow. In NPM1 and KMT2A-related AML, this protein plays a particularly important role — making these patients good candidates for this drug.

What did they find?

The results were striking:

• 93% of patients achieved a composite complete remission (meaning no or nearly no detectable leukemia)
• 88% achieved a full complete remission
• 83% had no detectable remaining leukemia cells at a very sensitive level (MRD negativity)
• After one year, 94% of NPM1-mutated patients were still alive — a very high figure for AML
• Side effects were mostly expected chemotherapy effects (fever with low white cell counts, low platelets). Serious specific side effects of ziftomenib — including differentiation syndrome and heart rhythm changes — occurred in only 3–4% of patients and were manageable.

What does this mean for patients? This is one of the most exciting results in newly diagnosed AML in years. Remission rates of 88–96% are very high by historical standards. If confirmed in the ongoing larger Phase 3 trial (KOMET-017), ziftomenib could become a new standard treatment for patients with NPM1 or KMT2A mutations who receive intensive chemotherapy.

Patient perspective: These numbers are genuinely impressive. For patients with NPM1 mutation in particular, achieving 94% one-year survival is remarkable. The safety profile also appears manageable. Patients with these mutations should ask their doctor whether they might be eligible for the follow-up Phase 3 trial or compassionate access programs.

Study 3: AK117 – An Immune System Booster Added to Standard Therapy

Who is this for? Older or frailer patients (75+, or younger with serious other health conditions) with newly diagnosed AML who cannot have intensive chemotherapy. Standard treatment for this group is azacitidine + venetoclax.

What is AK117?

AK117 is a new type of drug called a CD47 inhibitor (also called an “anti-phagocytic checkpoint inhibitor”). Here’s the idea in plain language: leukemia cells carry a signal on their surface that says “don’t eat me” to the immune system. AK117 blocks that signal, so the immune system’s cleanup cells (macrophages) can recognize and destroy the leukemia cells.

What did they find?

This was a small Phase 2 study (60 patients), so results are preliminary:

• Remission rates were similar between the two groups at 2 months (57% vs. 53%)
• But patients on AK117 stayed in remission longer (10.4 vs. 6.5 months)
• 9-month survival was strikingly different: 79% (AK117) vs. 43% (placebo)
• Fewer patients died from treatment-related causes in the AK117 group (17% vs. 30%)
• Side effects were broadly comparable, with no new safety concerns

What does this mean for patients? The survival difference at 9 months (79% vs. 43%) is striking — but this was a small study and the results need to be confirmed in larger trials. The drug did not cause extra anemia beyond what was already expected from the standard drugs.

Patient perspective: The 9-month survival difference is the most eye-catching number here, and it gives real hope. However, the study is small (30 patients per group), so it’s too early to draw firm conclusions. Larger trials are needed. Patients in this category should ask their doctors whether they might be eligible for trials combining AK117 or similar CD47 inhibitors with standard therapy.

Study 4: APOLLO – Quality of Life With Chemotherapy-Free Treatment for APL

Who is this for? Patients with acute promyelocytic leukemia (APL) — a rare and special subtype of AML — particularly high-risk APL. This study focused on how patients felt during treatment.

Background

APL has a chemotherapy-free treatment option: ATRA + arsenic trioxide (ATO). It was already known to work at least as well medically as ATRA + traditional chemotherapy. But did patients actually feel better on it? That’s what this study measured.

What did they find?

After the consolidation phase of treatment (the follow-up treatment cycles after the initial intensive phase), patients on the chemotherapy-free combination had:

• Significantly less fatigue (the difference was more than double the minimum patients would notice)
• Better physical ability to do daily activities
• Less nausea and vomiting
• Less loss of appetite
• Better social functioning and overall quality of life

During the initial intensive treatment phase, both groups felt similarly. The quality of life advantages emerged during the consolidation cycles.

What does this mean for patients? For patients with high-risk APL, the chemotherapy-free approach doesn’t just match chemotherapy for effectiveness — it also makes patients feel noticeably better during treatment. For many patients, this will tip the balance firmly in favour of ATRA+ATO.

Patient perspective: This study is especially important because it captures what patients actually experience — not just whether their blood tests look good. Fatigue, nausea, and the ability to carry on with life during treatment matter enormously to patients and families. Having evidence that the gentler treatment is also the better-tolerated one is powerful.

Study 5: Quizartinib vs. Midostaurin – Which FLT3 Drug Is Better?

Who is this for? Patients with newly diagnosed AML and a FLT3-ITD mutation (present in about 25–30% of AML cases), who are fit enough for intensive chemotherapy.

Background

Two drugs — midostaurin and quizartinib — are both approved to be added to intensive chemotherapy in FLT3-mutated AML. But they had never been directly compared in real patients. This study did exactly that — looking at real-world data from 215 patients at 12 US hospitals.

What did they find?

• 1-year survival: 93% (quizartinib) vs. 78% (midostaurin)
• 1-year event-free survival: 77% vs. 56%
• Remission rates: 85% vs. 73%
• Quizartinib had fewer treatment interruptions (11% vs. 25%) and fewer ICU admissions (5% vs. 15%)
• Side effects during treatment were broadly similar
• The FLT3 mutation was cleared from the blood at similar rates in both groups

What does this mean for patients? This is important real-world evidence suggesting quizartinib may produce better outcomes than midostaurin in FLT3-ITD AML. Both drugs are approved, but this study provides the first meaningful direct comparison. The advantage for quizartinib was seen across survival, remission, and tolerability during induction.

Patient perspective: For FLT3-ITD AML patients, it is worth having a specific conversation with their doctor about which FLT3 inhibitor they plan to use, and why. This study is not a randomized clinical trial (patients weren’t randomly assigned), so it has limitations — but it’s the best comparison we have. Asking “would quizartinib be appropriate for me?” is a very reasonable question.

Study 6: PALOMA – Better “Bridge” Treatment Before Stem Cell Transplant

Who is this for? Patients with higher-risk MDS (myelodysplastic syndrome — a blood disorder that can progress to AML) or AML with a low blast count (≤29%), for whom an allogeneic stem cell transplant (receiving healthy stem cells from a donor) is planned within 6 months.

Background

Before transplant, patients need treatment to get the disease under control. The standard options are azacitidine (a gentler drug) or standard intensive chemotherapy. This study tested CPX-351 — a specially formulated liposomal version of two chemotherapy drugs — as an alternative “bridge” to transplant.

What did they find?

• Event-free survival was significantly longer with CPX-351: the median EFS was not yet reached vs. 11.1 months with standard therapy
• The same proportion of patients in both groups (85–86%) successfully went on to receive the transplant
• Overall survival showed a trend in favour of CPX-351, but was not yet statistically significant
• Side effects were similar to what would be expected from intensive treatment in both groups
• Fewer patients had disease that failed to respond to treatment (primary refractory disease): 8 vs. 17

What does this mean for patients? For patients in this category and transplant is being planned, CPX-351 may give a better chance of reaching transplant in good condition — and staying disease-free longer. The transplant rate was the same in both groups, which is reassuring: the more intensive drug didn’t make it harder to get to transplant.

Patient perspective: The key message is that the “bridge” treatment matters — it’s not just a waiting room before transplant. Choosing the right treatment at this stage can meaningfully affect how long you stay disease-free. Patients should ask whether CPX-351 is available and appropriate for them.

Quality of Life Before Treatment Can Predict Outcomes — EORTC AML 21

Who is this for? Older adults (60+) with newly diagnosed AML.

What did this analysis find?

Using data from over 600 patients, researchers found that how patients felt before starting treatment — their fatigue level, physical function, and overall wellbeing, measured by questionnaire — independently predicted how long they lived. Even after accounting for age, blood counts, and genetic risk:

• Higher fatigue = higher mortality risk
• Better physical and role functioning = better survival (each 10-point improvement was linked to a ~4–7% reduction in mortality risk)
• These effects held even after adjusting for frailty scores that doctors typically use

What does this mean for patients? Patients’ subjective wellbeing before treatment matters beyond just doctor’s test results. This study supports the idea that how patients report feeling should be formally captured before treatment starts — not as a replacement for medical tests, but as additional important information.

Patient perspective: This is a quiet but important study. It validates something patients have long known: how patients feel going into treatment matters. It also sends a message to medical teams: simple questionnaires about quality of life aren’t just “nice to have” — they carry real prognostic information. Patients should feel empowered to report their symptoms honestly, and should not minimise fatigue or limitations when speaking with their medical team.

RevSTAR-123 – First Glimpse of a New CAR-T Approach for Relapsed AML

Who is this for? Adults with AML that has come back or stopped responding to prior treatments, where standard options are exhausted. The leukemia cells must carry a marker called CD123 (present in most AML cases).

What is this treatment?

This is an entirely new type of therapy: “off-the-shelf” CAR-T cells combined with a switchable adapter molecule. Here’s the plain-language version:

• CAR-T cells are immune cells that have been re-engineered to seek and destroy cancer cells
• Usually, CAR-T cells are made from the patient’s own blood, which takes weeks. These are pre-made from a healthy donor (“off-the-shelf”), meaning they can be given more quickly
• A special “adapter” molecule (R-TM123) is given at the same time to direct the CAR-T cells precisely at leukemia cells carrying CD123
• Importantly, the adapter can be switched on or off — giving doctors a safety switch if side effects occur

What did they find (very early data — 17 patients)?

• Only 1 serious dose-related side effect occurred
• No treatment-related deaths, no nerve damage, no graft-versus-host disease (a major risk with donor-based therapies)
• Immune side effects (cytokine release syndrome) occurred in 12 patients but were manageable
• 2 patients achieved full remission, 1 had a partial bone marrow response, 3 had their minimal residual disease disappear — at the highest doses tested

What does this mean for patients? This is very early, Phase 1 data with only 17 patients — so firm conclusions cannot yet be drawn. But the safety signal is encouraging, and seeing any responses (including full remissions) in heavily pre-treated patients is meaningful.

Patient perspective: For patients who have exhausted standard options, this kind of innovation matters enormously. The “switchable” and “off-the-shelf” features are important: switchable means doctors can reduce toxicity if needed, and off-the-shelf means faster access than personalised CAR-T therapies. This is one to watch as it progresses through clinical trials.

Summary: What Is New and What Does It Mean?

What’s new	Why it matters
Ziftomenib (menin inhibitor) added to standard chemo shows 88–96% remission in NPM1/KMT2A AML	Potentially practice-changing for a large subgroup
Quizartinib appears better than midostaurin in real-world FLT3 AML data	Supports reconsidering the default FLT3 drug choice
AK117 (CD47 inhibitor) adds survival benefit in unfit, older patients	New immune approach for patients with few options
ATRA+ATO is also better for quality of life, not just effectiveness, in APL	Chemotherapy-free treatment confirmed as the better all-round choice
CPX-351 beats standard bridging therapy before stem cell transplant in MDS/AML	Better disease control before transplant without sacrificing transplant access
Off-the-shelf switchable CAR-T is safe and shows early signals in relapsed/refractory AML	Genuinely novel approach for a very hard-to-treat group
Pre-treatment quality of life predicts survival in older AML patients	Validates self-reported wellbeing as a meaningful clinical tool

The Big Picture

AML treatment is becoming more personalized. More and more, your specific gene mutations — NPM1, FLT3, KMT2A, IDH1/2 — determine which treatment is most likely to help you. At the same time, the field is moving toward treatments that are not just more effective, but also better tolerated and less disruptive to life.

There is also growing recognition that what patients experience matters — fatigue, quality of life, and the ability to stay active during treatment are being measured and taken seriously in clinical research.

Sources: EHA 2026 abstracts S126, S130, S131, S132, S133, S170, S327, LBA5005, LBA5007. This  is for information purposes only and does not constitute medical advice.

Some words from Charles, ALAN Steering Committee Member

My third EHA Congress was a fascinating experience, giving me the perfect opportunity to continue my journey in patient advocacy. There was no doubting that patient voice formed an integral part of this year’s event, with many clinical sessions incorporating patient preferences and quality of life in a way that just wasn’t the case two years ago during my first Congress.

Congress was a great opportunity to progress my work with EHA’s AYA Taskforce, which has just ‘evolved’ into a Specialised Working Group (SWG). Its new status gives it even more weight within the structures of EHA, and I’m pleased to be taking a role on its Steering Committee going forwards. During our session, the Taskforce reminded itself of our recently published AYA Strategy with its four goals of Analysis, Improving Standards of Care, Policy, Education, and Research, which will be implemented over the coming years. Our efforts will be boosted by the fact the AYA will be EHA’s Topic in Focus (TiF) for the next four years, granting us more capacity and resources to bring better AYA care to life across Europe.

During Congress, I and other young patient advocates met with members of the Patient Advocacy Committee (PAC), where we identified key blockers in terms of resourcing and structure. I’m looking forward to working with the PAC to overcome these challenges and ensure it remains as effective as it can be in influencing the presence of patients at EHA Congresses and beyond.

It was a delight to see the Acute Leukaemia Advocates Network presenting two posters during Congress this year, in collaboration with CML Advocates, CLLAN, HM-Pro, and QOL-One. These posters explored different approaches to measuring patient quality of life, including by proxy assessments of caregivers and the physical and psychosocial impact on them during a patient’s diagnosis, treatment, and follow up. This poster specifically raised some interesting questions about how patient reported outcome measures (PROMs) should be used in clinical trials in future!

The next 12 months will be an exciting time for AYA patient advocacy, with the aim being to present our own poster at Congress 2027 on the results of our AYA sexual health survey. A webinar is also in the works for Q3 2026, so stay tuned!

Key Insights from ALAN’s Presentations at EHA2026

This year’s European Hematology Association Congress in Stockholm was a milestone moment for patient advocacy in hematology. The Acute Leukemia Advocates Network (ALAN) was proud to contribute research, presentations, and a persistent call to action: that patient experience data must move from the margins to the centre of how we develop, evaluate, and approve medicines for people with acute leukemia.

Across multiple sessions and poster presentations, ALAN’s work this year made one thing abundantly clear: survival statistics do not tell the full story. Here is what we shared — and why it matters.

Why Patient Experience Data Must Shape Drug Approval

In the opening, we set the scene with a central challenge: regulatory bodies including the FDA and EMA increasingly value patient input — yet in practice, patient perspectives arrive late, remain anecdotal, and often fail to capture what patients actually experience in daily life.

ALAN’s patient experience data — drawn from over 2,500 leukemia patients across more than 80 countries — demonstrated several critical findings:

• Patients with acute leukemia largely prioritise treatment efficacy, but quality of life and convenience also matter — and these priorities shift across the treatment journey.
• Patient priorities differ meaningfully from general population preferences, which has direct implications for how economic evaluations and HTA assessments are conducted.
• Cognition and tiredness emerge as critical domains that are nearly absent from standard EQ-5D evaluations — yet patients rank them on a par with pain and discomfort.
• Caregiver burden is substantial and systematically overlooked in benefit–risk assessments.

The key message: if we do not systematically collect what matters to patients, we risk approving medicines that prolong life — but ignore how that life is lived.

PROMs and FROMs: The Key to Patient and Family-Centred Care

A full presentation made the case for embedding Patient-Reported Outcome Measures (PROMs) and Family-Reported Outcome Measures (FROMs) as standard clinical practice — not merely research tools. ALAN’s evidence base, spanning studies from 2019 to 2026, shows consistently that what clinical trials measure and what patients experience are frequently misaligned.

What trials measure vs. what is often missing:

What Trials Measure	What is Often Missing
Complete remission rate	Fatigue & cognitive impact
Overall survival	Emotional distress / depression
Progression-free survival	Social isolation & relationships
Adverse event grading (CTCAE)	Caregiver burden & family QoL
	Eating habits & daily function

The call to action is clear — and urgent. ALAN calls for:

• Immediate: All hematology centres to adopt validated PROMs and FROMs at diagnosis, during treatment, post-treatment, and at relapse — alongside family FROMs.
• Short-term: Quality of life to become a co-primary endpoint in all new acute leukemia clinical trials, with shared validated instruments and genuine patient involvement in trial design.
• Medium-term: Real-world registries linking trial PRO/FRO data to clinical outcomes; targeted psychosocial, financial, and practical support services commissioned from this evidence.
• Long-term: Integration of PROMs and FROMs into EU Joint Clinical Assessments and national HTA frameworks.

Beyond the Blood Count: Qualitative Research and the Invisible Carer

The final presentation drew on ALAN’s multinational qualitative study of 60 informal carers across the UK, US, France, Germany, Italy, and Spain. Semi-structured interviews, analysed using reflexive thematic analysis, generated three interlinking themes:

Impact of the Carer–Patient Dynamic

Relationships deepen under adversity but also fracture under the weight of role conflict. Partners become nurses; parents become patients. Some relationships come close to breaking point.

Balancing Multiple Roles

47% of carers in the study were working full-time while providing intensive caregiving. Financial toxicity — lost income, insurance costs, depleted savings — was a near-universal experience.

Putting the Patient First

Carers rapidly become lay experts in leukemia while consistently deprioritising their own health, social life, and wellbeing. Treatment preference discordance is common: carers tend to prioritise quality of life for the patient, while patients often prioritise survival.

Key statistic: 58% of informal caregivers reported a very large or extremely large impact of illness on their own quality of life. 15% reported no support network whatsoever.

The message to clinicians was direct: the carers you never see are in every room with every patient. Qualitative research makes them visible — and what be comes visible can be acted upon.

Family Carer Burden and Proxy PRO Concordance (PF1399)

This poster examined whether family carers can serve as reliable proxies for patient-reported outcomes — a critical question for trial design and clinical practice. The findings revealed an important nuance:

• Over 25% of carers provided more than 36 hours of care per week — a level of intensity comparable to full-time employment.
• Carers showed moderate agreement with patients on observable domains such as physical functioning and symptoms.
• However, carers consistently underestimated emotional wellbeing and overall QoL — particularly in acute leukemia.
• Agreement was weakest for emotional behaviour (kappa = 0.17 in acute leukemia; p = 0.04), confirming that carers cannot substitute for direct patient reporting on psychosocial domains.
• Integrating both patient and carer assessments provides a more complete picture for holistic leukemia management.

Conclusion: Carer input is valuable but should complement — not replace — direct patient-reported outcomes.

Emotional Distress Dominates Quality of Life in CML (PF1396)

A poster presenting psychometric validation of the HM-PRO instrument in 660 CML patients confirmed that emotional burden — not physical symptoms — is the primary driver of quality of life impairment in this population.

Key findings:

• Moderate-to-extremely-large effects in the emotional behaviour domain were reported by 75% of respondents.
• Future health concerns (39.4%), sleeping changes (32.8%), and feeling like a burden to others (28.8%) were the most frequently reported severe emotional issues.
• Despite a low overall symptom score, fatigue-related symptoms remained prominent: tiredness (83%) and reduced energy (74.6%) were near-universal.
• The HM-PRO demonstrated excellent internal consistency (Cronbach’s α = 0.912 for Part A), confirming its validity as a disease-specific PRO instrument for CML.

Conclusion: Structured psychosocial and QoL assessment using validated, disease-specific instruments must become standard in multidisciplinary CML care.

Sleep Disturbances: A Clinically Meaningful Unmet Need (PF1394)

A new poster presented data from an international cohort of 329 patients with hematological malignancies, examining sleep disturbances after diagnosis. The findings were striking:

• 80% of respondents who completed the Pittsburgh Sleep Quality Index (PSQI) reported poor global sleep quality.
• 59.3% reported their sleep had become worse following diagnosis.
• Anxiety, fatigue, night sweats, and pain were the main sleep-disrupting symptoms.
• A profound communication gap was identified: most patients had never discussed their sleep with their healthcare team, and 32.5% rated clinical management of their sleep negatively.
• CML patients exhibited significantly higher sleep disruption burden than MDS patients across multiple PSQI domains.
• Non-pharmacological strategies were preferred by patients, yet educational resources on sleep management remain largely unavailable.

Conclusion: Sleep should be recognised as a clinically relevant quality-of-life domain and a formal target for supportive care in hematology.

In Conclusion

EHA2026 reinforced what ALAN has been saying for years: the evidence base for patient-centred care in hematology is no longer a ‘nice to have’. It is robust, it is global, and it demands action.

Ultimately, PED, PROMs, FROMs, and qualitative research ensure that new medicines are not only clinically effective — but meaningful to the people living with the disease, and the people who love them.

The time for pilot projects and ‘we should’ is over. We need to act now.

A new international study asked 267 people living with acute leukemia what they value most when choosing a treatment. Here’s what they said — and why it matters for you.

Countries studied: UK, USA, France, Germany, Italy    Participants: 267 adults with acute leukemia    Published: June 2026

Why was this study done?

When acute leukemia comes back after treatment — or doesn’t respond in the first place — choosing what to do next is one of the hardest decisions a patient and their family can face. New treatments exist, but they come with different trade-offs: some work better, some are easier to take, some have harder side effects.

Doctors and policymakers often make decisions about which treatments to approve or fund — but until recently, very little research had asked patients themselves what they actually want from a treatment. This study set out to change that, by collecting the views of hundreds of people living with acute leukemia across five countries.

What did the study ask?

Participants were shown pairs of imaginary treatments and asked to choose between them — again and again, with different combinations. This method, called a discrete choice experiment, is designed to reveal what people truly value by forcing realistic trade-offs. Five treatment features were tested:

• The chance of the treatment working
• How long the treatment response lasts
• Quality of life while receiving treatment
• Quality of life after responding to treatment
• How the treatment is given (tablet at home, outpatient injection, or hospital stay)

What did people with acute leukemia say?

Efficacy comes first — but it’s not the whole picture

Across all five countries and all types of acute leukemia, the single most important factor was the chance of the treatment working. This made up 62% of what drove people’s choices — far more than anything else. But patients cared about more than just response rates.

How patients ranked treatment factors:

Chance of responding to treatment	62%
Quality of life after responding	14%
How long the response lasts	9%
Quality of life during treatment	8%
How treatment is given	7%

Based on 267 participants (mixed logit model)

Interestingly, people cared more about how they would feel after treatment worked than how they felt during treatment itself. This tells us that patients are thinking ahead — they want life after leukemia to be as good as possible, not just to get through the treatment.

Taking treatment as a tablet at home was preferred over hospital-based injections, though this was less important than the treatment actually working.

Not all patients think the same way

The study found three different types of decision-makers among the participants. This is a reminder that there is no single “right” way to approach treatment — your priorities are personal, and they matter.

47% Efficacy-focused Almost all choices based on the chance of treatment working. Often recently diagnosed or had a relapse.

21% Convenience- & efficacy-focused Valued how long a response lasts and how easy treatment is to take, alongside the chance of response. More common among US participants.

32% Balanced decision-makers Considered nearly all factors: chance of response, quality of life during and after treatment, and how long the response lasts.

“Patients who had been diagnosed more recently, or who had experienced a relapse, were more likely to focus almost entirely on the chance of treatment working — suggesting that facing the disease head-on sharpens the focus on getting a response.”

Does it matter where you live?

The study found that patients in the UK and Europe had very similar views. But patients in the USA stood apart: they placed greater weight on how long a response lasts, quality of life after responding, and how the treatment is given.

The researchers believe this may be because hospital-based treatment in the US comes with significant personal financial costs — making the convenience of at-home treatment more important for American patients.

This matters because it shows that what works best for patients in one country may not be the same for patients in another. Treatment decisions are shaped not just by the disease, but by the healthcare system around you.

What does this mean for you?

Here are the key takeaways from this research for patients and their families:

• Your priorities are valid. Whether your focus is purely on the chance of treatment working, or on quality of life and convenience, you are not alone. This research shows that all of these are legitimate priorities.
• Talk to your clinical team. The variation in preferences found in this study underlines how important it is for clinicians to have individual conversations with patients — not to assume that one set of priorities fits everyone.
• Post-treatment quality of life matters. Many participants cared deeply about how they would feel after responding to treatment, not just whether they responded. Don’t be afraid to raise this with your doctor.
• Patient voices shape policy. Studies like this one are used by health agencies when deciding which treatments to approve and fund. The more patients participate in research, the better decisions become.

Read the full study

This study was published open access in Patient Preference and Adherence (2026) and can be read in full at no cost.

DOI: https://doi.org/10.2147/PPA.S599189

Making acute leukemia clinical trial data accessible, visual, and actionable — for patients, caregivers, advocates, and clinicians.

Understanding the treatment landscape is the first step towards effective advocacy. We built the Drug Development Dashboard to put that understanding within reach of everyone touched by acute leukemia.

Thousands of clinical trials in acute leukemia are registered on ClinicalTrials.gov — a vast, publicly available dataset. The challenge has never been access to the data. It has been making sense of it. Filtering out noise, spotting patterns, drawing comparisons, and turning raw numbers into arguments that move policy forward.

That’s the problem ALAN set out to solve with the Drug Development Dashboard: a free, interactive tool that aggregates all relevant acute leukemia trial data from ClinicalTrials.gov and presents it through purpose-built visualisations designed for advocacy, clinical practice, and patient engagement.

What you’ll find inside

The dashboard gives you a comprehensive, filterable view of the clinical research landscape across AML, ALL, and APL. Every chart and data point is sourced directly from ClinicalTrials.gov, refreshed once a month so you’re always working with current information.

Dashboard filters

Use any combination of the following to zero in on exactly the data you need:

• Study timeline Filter by trial start and completion dates

• Geographic focus Narrow results by country

• Patient population Filter by age of enrolled participants

• Condition Focus on AML, ALL, or APL specifically

• Study status View only active, recruiting, or not-yet-recruiting studies

• Research phase Filter by Phase I, II, III, or IV

Who is it for?

We built the dashboard with a broad audience in mind. Whether you’re approaching the data from a personal, professional, or policy perspective, there’s a way in.

• Patients & Caregivers : Explore what’s being studied for your specific diagnosis, and find trial matching support through ancora.ai

• Advocates & Campaigners: Download graphs and data to support policy conversations, funding arguments, and awareness campaigns

• Clinicians & Researchers: Stay informed about the evolving research landscape and track changes across trial phases and conditions

Turning data into advocacy

ClinicalTrials.gov is an extraordinary resource, but it wasn’t built for advocates. Navigating its raw search interface to produce campaign-ready evidence is time-consuming and requires a level of data literacy most people shouldn’t need to develop just to make their case.

The ALAN dashboard does that work for you. The visualisations are designed specifically to surface insights that matter for advocacy — trial gaps by condition, phase distribution, geographic concentration of research, and more.

Once you’ve found the graphs that tell your story, download them as PNG images or a full PDF report for use in presentations, funding applications, or policy submissions.— ALAN Drug Development Dashboard guidance

If you use data from the dashboard in your work, please credit it as: Acute Leukemia Advocates Network.

Keeping up with what’s new

The dashboard includes a dedicated Updates tab so you can see exactly what has changed since the last monthly data refresh — new studies added, status changes, and notable shifts in the research landscape. It’s a fast way to stay current without having to re-examine the full dataset each time.

Data sourcing note: All information displayed on the Drug Development Dashboard is sourced directly from ClinicalTrials.gov and refreshed monthly. While ALAN works to ensure accuracy, it cannot be held responsible for errors or omissions in the source data. For questions or feedback, reach out to info@acuteleuk.org.

We’d like to share an opportunity that may be relevant for patient advocates in our community who are interested in contributing to research and other health-related initiatives in a structured way.

Symmetrian has launched its Beta version. Symmetrian is a digital matchmaking platform designed to connect qualified patient experts with research and health-related initiatives that are looking for meaningful patient involvement.

Who can register now

During this initial Beta phase, registration is open only to:

• Individual patient advocates (patient experts)
• Patient advocacy groups (PAGs)

Researchers and other requesters (for example academic teams, funders, and industry) will be onboarded later, currently planned for Q3/Q4 2026. The goal of starting with the patient community is to build a strong base of validated expertise, ensure the platform is practical and clear for advocates first, and establish safeguards and expectations before opening requests more widely.

What Symmetrian is

Symmetrian IS:

• A platform to help research and health-related initiatives identify and involve the right patient experts in a fair, transparent, and structured way
• A way for patient expertise to be visible and ready before opportunities arise, rather than relying on informal networks or ad-hoc outreach

Symmetrian is NOT:

• A clinical trial recruitment platform
• A survey tool
• A social network

So, registering does not mean you will be contacted immediately. It means your expertise is documented and searchable, so you can be approached for relevant involvement opportunities as the platform expands.

What you gain by joining 

By registering, you can: 

• Directly influence research, helping ensure it reflects real patient needs and priorities. 
• Get matched to relevant opportunities efficiently, based on your knowledge and expertise, including projects across the research lifecycle. 
• Help define meaningful endpoints and outcomes, and articulate patient-added value. 
• Amplify the patient voice in decision-making. 
• Work alongside researchers, regulators, and industry in a structured, collaborative environment. 
• Be part of a patient-led, transparent initiative that is building a better system for meaningful involvement. 
• Support broader participation across the network, helping ensure diverse perspectives, not only the same small group of repeatedly selected advocates. 

What you can do now

Learn more:

1. Website: www.symmetrian.org
2. Questions: contact@symmetrian.org

Know the Signs. Act on Them. It Saves Lives.

Research and campaigns by ALAN have consistently shown one thing: men are significantly less engaged in leukemia prevention, awareness, and early detection than women. That gap has real consequences. Acute leukemia is fast-moving — it can progress from early symptoms to a critical stage within weeks. Knowing what to look for, and actually acting on it, is one of the most powerful things a man can do for himself and for those who love him.

UNDERSTANDING THE DISEASE

What Is Acute Leukemia?

Leukemia is a blood cancer affecting white blood cells, which normally fight infection. In acute leukemia, abnormal white cells are produced in large amounts in the bone marrow — growing so fast they crowd out healthy cells. This disrupts the blood’s ability to carry oxygen, fight infection, and clot properly, producing the symptoms described in this newsletter.

There are several subtypes. The most common include:

Code	Full Name	Key Notes
AML	Acute Myeloid Leukemia	More common in older adults; can progress from MDS or MPN
ALL	Acute Lymphoblastic Leukemia	Affects lymphoblasts; more common in children but adults are affected too
APL	Acute Promyelocytic Leukemia	Rare subtype of AML with distinct treatment approach

“Symptoms can be vague and non-specific — not everyone experiences the same signs before diagnosis. Knowing what to look out for could help you visit your doctor sooner.”

RECOGNIZE THE WARNING SIGNS

Seven Symptoms Men Tend to Dismiss

These symptoms are easy to explain away as stress, aging, or overwork. Don’t. If any of these persist for two or more weeks, contact your doctor. Early diagnosis in acute leukemia is especially critical — time matters.

Symptom	What to know
Extreme Fatigue	The most common symptom of blood cancer. Tiredness that does not improve with rest, keeps returning, or is getting progressively worse. Pay attention if fatigue lasts more than 2 weeks or is accompanied by other symptoms.
Shortness of Breath	Breathlessness during ordinary, everyday activities — or a noticeable ‘sudden drop in fitness.’ Often mistaken for aging or lack of exercise. Approximately one-third of patients report this prior to diagnosis.
Frequent Infections	Recurring fevers, sore throats, or infections your body struggles to fight off. This is a sign your immune system may be compromised. About a quarter of patients experience this before diagnosis.
Unusual Bruising or Bleeding	Bruises in unusual places, many bruises with no clear cause, or wounds that take longer to heal. The 4th most common leukemia symptom — do not dismiss unexplained bruising.
Fever or Night Sweats	Severe night sweats that soak clothing or bedding despite a cool environment, especially when combined with unexplained weight loss or other symptoms.
Bone or Joint Pain	A constant dull ache or sharp pain in the arms, legs, or chest — present even at rest. About a quarter of patients experience this. It is often mistaken for arthritis or muscle strain.
Unexplained Weight Loss	Losing weight or appetite without dietary changes. When combined with other symptoms on this list, this warrants prompt medical attention.

⚠  IMPORTANT: Acute leukemia develops quickly. The window between noticing symptoms and seeking care can significantly affect outcomes. If something feels off for more than two weeks, see a doctor — do not wait.

THE AWARENESS GAP

Why Men Are More at Risk from Late Diagnosis

ALAN’s own research shows that men are less likely to participate in leukemia awareness initiatives, less likely to seek medical attention early, and underrepresented in the communities built to support patients. Among all of ALAN’s social media followers, only 30% are men — while women make up 70%.

This is not a biological difference — it is a behavioral one. The same patterns that keep men from visiting the doctor for general health keep them from acting on blood cancer symptoms: dismissing fatigue as ‘normal,’ attributing breathlessness to fitness, or simply not wanting to seem concerned.

The goal is to bridge the awareness and prevention gap between men and women — because that gap has consequences for survival.

WHAT YOU CAN DO

Listen to Your Body — Then Act

Awareness is only the first step. These actions can make a real difference:

• Don’t wait two months — wait two weeks. With acute leukemia, time matters. If you have had unexplained fatigue, bruising, or recurring infections for more than two weeks, call your doctor promptly.
• Ask for a full blood count. A simple blood test is often the first step in leukemia diagnosis. If you are describing these symptoms, it is reasonable to ask your doctor specifically for one.
• Keep a symptom record. Note when symptoms started, how often they occur, and how they feel. This context is valuable for your doctor and helps ensure nothing is overlooked.
• Talk to the people around you. Partners, friends, and family often notice changes before we do. Let them be part of your health awareness — not just your diagnosis story.
• Know that treatment options exist. Acute leukemia is treated with chemotherapy, targeted therapy, immunotherapy, and stem cell transplant. Early diagnosis opens more doors. Late diagnosis closes them.

FOR PATIENTS AND CARERS

You Are Not Alone in This

If you or someone close to you has been diagnosed with acute leukemia, ALAN connects patients and carers with member organizations worldwide. From understanding your diagnosis to navigating treatment options and clinical trials, the network exists to support you at every stage.

#WeAreMen  ·  #BeLeukemiaAware  ·  #EarlyDiagnosisSavesLives

European Hematology Association Congress 2026 · 11–14 June · Stockholm, Sweden

We are proud to attend EHA2026 this June, participating in a full programme of patient advocacy meetings, scientific sessions, and oral and poster presentations. Below is a day-by-day overview of our engagement across the congress.

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Thursday, 11th June

• ALAN members and supporters meeting – Presenting: ALAN team
• Training new advocates – Involved: Samantha Nier
• EHA Patient Joint Symposium – Session 1 One year of EU HTA regulation: Delivering for patients and clinicians?
• EHA Patient Joint Symposium – Session 2 How Patient Experience Data (PED) can inform the approval of new medicines? Chair and Speaker: Samantha Nier
• EHA Patient Advocacy Committee meeting – Participating: Jan Geissler, Sophie Wintrich, Charles McGrath, Samantha Nier

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Friday, 12th June

• YoungEHA session: How can we integrate qualitative research into hematology? Speaker: Samantha Nier
• EHA Patient Advocacy Committee meeting – Participating: Jan Geissler, Sophie Wintrich
• Oral session: Patient-centered outcomes in hematology: Quality of life, equity and value – Chair: Samantha Nier
• Poster Presentations

Sleep Disturbances after Hematological Malignancies Diagnosis: Prevalence and Severity in a Patient Survey Esther N. Oliva, Matteo Fattizzo, Roberta Siclari, Maria Teresa Voso, Carmelo Gurnari, Chiara Frairia, Pasquale Niscola, Giuseppe Iannì, Vaitsa Katsomitrou, Ravi Bimolah, Cindy Carasig, Marife Colis, Giorgia Francesconi, Rhodora Relucio, Muna Rimal, Samantha Nier EHA Library. Oliva E. 06/11/2026; 4207282; PF1394

Emotional Distress Dominates Quality of Life Burden in CML: Psychometric Validation of Patient Reported Outcomes in a Global Leukemia Experience Survey Samantha Nier, Denis Costello, Matteo Fattizzo, Giuseppe Iannì, Esther N. Oliva EHA Library. Nier S. 06/11/2026; 4207284; PF1396

Family Carer Burden and Their Proxy Concordance of Patient-Reported Outcomes: A Global Leukemia Experience Survey Samantha Nier, Matteo Fattizzo, Giuseppe Iannì, Tatyana Ionova, Sam Salek, Esther N. Oliva EHA Library. Nier S. 06/11/2026; 4207287; PF1399

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Saturday, 13th June

• AML Scientific Working Group Meeting – Participant: Samantha Nier
• EHA Symposium on Patient Communication – Organiser: EHA Patient Advocacy Committee with the lead from Sophie Wintrich and Natacha Bolanos)
• EHA-EMA-FDA Session on Global Trials : Speaker: Loris Brunetta
• Scientific Working Group: Quality of life and symptoms: Translating clinical trial outcomes to clinical practice in hematological malignancies – Speaker: Samantha Nier

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Sunday, 14th June

• EHA Patient Advocacy Committee meeting – Participating: Jan Geissler, Sophie Wintrich, Samantha Nier / Moderator: Anne-Pierre Pickaert
• Training New Advocates
• AYA Session: Fertility preservation in AYA – Current challenges and future perspectives – Part of the Taskforce: Charles McGrath

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From patient advocacy and regulatory dialogue to cutting-edge research on quality of life, sleep, and carer burden — EHA2026 is a vital opportunity to advance the science and practice that matters most to patients and families living with hematological conditions.

Strategic Planning Essentials for Blood Cancer Patient Advocacy Organisations – On-Demand Course Now Open!

Dear members and friends,

We’re excited to announce that the first of 3 courses in our educational programme “Foundation to Impact: Building Strong Blood Cancer Patient Advocacy Organisations” is now available in an on-demand format on the Blood Cancer Patient Advocates Academy platform!

Our first course, “Strategic Planning Essentials for Blood Cancer Patient Advocacy Organisations,” covers key elements needed to develop and strengthen your organisation’s strategic direction. It is an unmissable starting point for any advocate looking to grow its impact.

This flexible learning opportunity is now open anytime, anywhere, allowing you to enrol and begin immediately, all at your own pace.

                                       

Why taking the course? 

Strong patient advocacy organisations don’t happen by chance, they are built on clear strategy, strong leadership, and a shared vision.

Whether your organisation is just starting out or looking to grow, having a solid strategic foundation is essential to:

• Define your mission and long-term goals
• Make informed decisions and prioritise actions
• Strengthen credibility with stakeholders and partners
• Ensure sustainability and long-term impact

 

What will you learn?

Across 7 in-depth lessons and 4 hours of e-learning content, you’ll explore:

• The principles of organisational strategy and approaches to strategic planning
• How to review your organisation’s identity, including vision, mission, and core values
• How to conduct a situation analysis and define strategic objectives
• How to measure and communicate success
• The importance of being a learning organisation

 

You will hear directly from Kathy Redmond, Strategist and Coach, who will guide you through all lessons.

           

Flexible, Self-Paced Learning

Our on-demand format allows you to:

• Start anytime – no registration deadlines or waiting lists
• Learn at your own pace – access all materials instantly
• Earn a certificate of completion upon finishing
• NEW: Receive a Certificate of Knowledge when you complete all three courses in the full programme

 

The course is delivered in English, with Spanish subtitles available.

It is free of charge and open to all  blood cancer advocates, caregivers, healthcare professionals, and young patients. No pre-registration form is required.

Simply:

1. Create an account (if you don’t already have one) and Enrol in the full program HERE
2. Start learning right away!

                                                            ENROLL TODAY

Start learning today and take the next step towards building a stronger, more impactful advocacy organisation.

A landmark international study involving more than 2,260 leukaemia patients from 64 countries has found that the quality of communication between clinicians and patients is significantly associated with patients’ quality of life (QoL) — and that depression and social isolation are among the most powerful predictors of poor wellbeing.

What the Study Did

Researchers used an online questionnaire, open between August 2023 and January 2024, to gather patient-reported data on diagnosis, treatment, communication experiences, and QoL. Quality of life was measured using the HM-PRO, a validated tool designed specifically for people with blood cancers. Statistical analyses and machine learning models were used to identify the factors most strongly linked to QoL outcomes.

What They Found

Communication makes a difference. Patients who said their diagnosis was explained clearly, who were told about their condition sensitively, and who were meaningfully involved in treatment decisions consistently reported better QoL scores. Those who answered “yes, definitely” to these questions fared measurably better than those who said “no” or “only to some extent.”

Mental health and isolation are central. Across both QoL measures, depression and social isolation emerged as the strongest predictors of poor outcomes — outweighing disease type as a factor. Disease-related anxiety and fatigue also played a role.

Younger patients carry a disproportionate burden. Patients aged 18–25 reported the highest QoL burden of any age group, challenging assumptions that older cancer patients always fare worse. The disruption to work, education, and social life, alongside limited experience coping with serious illness, may partly explain this.

Acute leukaemia is harder on QoL than chronic forms. Patients with ALL and AML reported worse QoL scores than those with CLL or CML, though disease type explained only a small proportion of overall variation.

Gender and income disparities exist. Female patients reported worse outcomes than male patients. Those on lower incomes also fared significantly worse, pointing to the role of socioeconomic factors in patient wellbeing.

What This Means for Practice and Advocacy

The findings support a shift toward holistic, person-centred leukaemia care — one that treats psychological wellbeing as a core part of treatment, not an afterthought. Specific recommendations from the authors include:

• Routine screening for psychological distress as part of standard care
• Training for clinicians in patient-centred communication
• Peer support groups and counselling integrated into care pathways
• Advocacy organisations targeting underserved groups with equitable access to information and support
• Dedicated programmes for younger patients, who appear particularly vulnerable

A Note on Limitations

The study is cross-sectional, meaning it captures a snapshot in time and cannot establish cause and effect. Participants were recruited through patient advocacy networks, so findings may not fully represent all leukaemia patients — particularly those who are less engaged or digitally excluded. Clinical diagnoses were self-reported and not independently verified.

Read the full open-access article: Nier S, Poots AJ, Gunn S, et al. Relationships Between Clinician-Patient Communication and the Quality of Life of Patients With Leukaemia: A Prospective Cross-Sectional Global Study. Cancer Control. 2026. DOI: 10.1177/10732748261433287

This survey is intended for individuals diagnosed with a hematological malignancy and aims to collect information about their experience of the disease and sleep quality.

Participation is entirely voluntary. The survey is anonymous and does not involve the collection of personally identifiable data (such as name, surname, address, or contact details). There are no risks associated with participation, and completing the survey will in no way affect the course of treatment or the relationship with healthcare professionals.

The data collected will be used exclusively in aggregated form for informational, educational, and research purposes, and to improve understanding of patients’ experiences, in compliance with current data protection regulations (EU Regulation 2016/679 – GDPR). If you want to know more, please read the Privacy Notice

Completion of this survey implies informed consent to participate and to the processing of data as described above.

Take the survey:

English: https://docs.google.com/forms/d/e/1FAIpQLSeozz7hiegsUZ9QXzdTXwHQWbPNXlt2w28eGLm2yAF3lz1tgQ/viewform

French: https://docs.google.com/forms/d/e/1FAIpQLSfujm3kiZ1PhVDN6pbtBSe_nKFyhQdy1VZHoESMfz3OWryS5Q/viewform?usp=header 

Danish: https://docs.google.com/forms/d/e/1FAIpQLSejnEQv7xeZl0SA2b1a5EEf0BcVhHDOaMjlpO0gDMMnc9UdSQ/viewform?usp=header 

Or scan the QR code:

Thank you for your time !