3 months to #WLD23 !

#WLD23 – World Leukemia Day is 3 months away and we prepared a toolkit for you!

This toolkit is designed to encourage various stakeholders involved in World Leukemia Day (e.g., patient advocates, pharmaceutical companies, HCPs, etc.) to use common #WLD23 messages on their social media platforms and websites.

Toolkit –> download it ! World Leukemia Day toolkit 2023

No time or capacity to implement this toolkit? You can still engage your audience by reposting and resharing our posts!

WORLD LEUKEMIA DAY – 4th September 2023

World Leukemia Day on 4th September is a yearly global campaign in collaboration with patient groups across the globe.

It’s the one day of the year people from all around the world can come together to help raise awareness of leukemia. By raising awareness of leukemia and educating the world on the signs and symptoms of the condition, we can work together to help leukemia patients get diagnosed and provide better outcomes for them. You can make a difference no matter who you are and where you live.

Leukemia is the 13th most common cancer in the world. Over 437,000 people are diagnosed with leukemia each year, that’s over 1000 people every day. However, the non-specific signs and symptoms make it difficult to spot. There are over 300,000 deaths caused by leukemia worldwide.

Our campaign is vital because survival rates for leukemia are significantly lower than most common cancers and these rates are worsened by the high rates of emergency diagnosis.


The campaign will continue to address the previous years’ campaign topics, sharing knowledge about signs, symptoms and early detection, and underlining the importance of visiting the doctor when experiencing symptoms.

It will also include contents dedicated to patients, carers, general public and GPs.


– By raising awareness of leukemia and educating the world on the signs and symptoms of this condition, we can work together to help leukemia patients get diagnosed and provide better outcomes for them. You can make a difference no matter who you are and where you live.

– Encourage people to get seen by a healthcare professional – This will help reduce the numbers of preventable leukemia deaths across the world and provide patients with greater outcomes.

– Healthcare professionals have to be trained to better manage and address potential patients and new diagnosed patients.


#BeLeukemiaAware #WLD23 #WorldLeukemiaDay #Leukemia #PatientAdvocacy


All materials for use can be found on



Check out all the materials ! WLD23_Materials


A dedicated calendar is prepared from June to September. You can use the prepared posts and/or make your own posts !

Social media calendar –> check it here –> WLD23_Social media plans

June calendar and posts: WLD23_June posts

Join us on 4th September for World Leukemia Day !

September is Blood Cancer Awareness Month

Blood Cancer Awareness Month was established to increase public understanding of blood cancers and to raise awareness about the need for improved treatments, early diagnosis, and increased funding for research.

Since its inception, Blood Cancer Awareness Month has grown in popularity and is now recognized annually in many countries. During the month, organizations and individuals come together to raise awareness, share their experiences, and advocate for increased funding and support for those affected by blood cancers.

The success of Blood Cancer Awareness Month has led to increased public understanding of these diseases and has helped to raise the profile of the need for increased funding and resources for research, treatment, and care for those affected by blood cancers.

Get involved

During the month of September, one way to raise awareness of blood cancer is to promote and participate in Blood Cancer Awareness Month within your own communities, such as in your workplace or on social media. To help you get involved, various resources are available for download from our supporters, including digital resources, posters, and social media tiles.

More information: https://bloodcanceraware.org/


Webinar: The importance of MRD in acute leukemia

Today, we hold an educational webinar that gave an overview on the importance of MRD in acute leukemia.

Recording and presentation are available on request. 

We were joined by:

Prof. Dr. Med Michael Heuser
Chair for Molecular Therapies in Hematology Medizinische Hochschule Hannover

Anne-Pierre Pickaert
ALAN Steering Committee member

Big thank you to our speakers !

ALAN’s abstract accepted for poster presentation at EHA

Earlier this year, ALAN submitted an abstract Living with acute leukemia: A global survey of patients and carers experience for the EHA2023 Congress taking place in Frankfurt (Germany) from 8th to 11th June 2023.  

The abstract has been selected by EHA Scientific Program Committee for a poster presentation during the congress.

Here are our presentation details:

Session Date: Friday 9th June 2023
Presentation Time: 6:00 PM – 7:00 PM – local time.
Publication Number: P1688
Title: Living with acute leukemia: A global survey of patients and carers experience


In the context of our collaboration with various stakeholders in the T2EVOLVE project, we are happy to share that the T2EVOLVE-QUALITOP European patient survey on CAR T-cell therapy is now open !

This survey will help to understand patients’ experiences with CAR T-cell therapy, evaluate the impact of this treatment on quality of life and identify unmet needs. With this information we aim to improve quality of life in patients receiving CAR T-cell therapy and their carers by optimizing support and improving the CAR T-cell treatment journey.

All European adult patients (≥ 18 years) who received CAR T-cell therapy for a hematologic malignancy (no specific indication required) can participate by filling in a digital survey.

Now, we need you!

If you are a patient treated with CAR T-cell therapy for a hematologic malignancy in Europe we would like to invite you to share your experiences with us by participating in our survey!

If you are not a patient but you are in close contact with patients who receive CAR T-cell therapy (e.g. a patient association, hematologist, nurse or other healthcare professional) we would like to invite you to help us by sharing this survey with patients!

Information: https://t2evolve.com/european-patient-survey-on-car-t-cell-therapy-to-gain-insights-into-patients-experiences-quality-of-life-and-unmet-needs/

You can use the attached QR code or the following link to access the survey (password: t2evolve): https://t2evolve.fyi/patientsurvey

The survey is available in English, French, German, Spanish, Italian, Portuguese and Dutch.

The survey will be open until the 31st July 2023.

Translated brochures:

T2EVOLVE-QUALITOP_Encuesta a pacientes europeos sobre la terapia con células CAR-T

T2EVOLVE-QUALITOP_Enquête européenne auprès des patients sur la thérapie par cellules CAR-T

T2EVOLVE-QUALITOP_Europäische Patientenbefragung zur CAR-T-Zell-Therapie

T2EVOLVE-QUALITOP_European patient survey on CAR T-cell therapy

T2EVOLVE-QUALITOP_Europese patiëntenenquête over CAR T-celtherapie

T2EVOLVE-QUALITOP_Inquérito a doentes europeus submetidos a terapêutica com células CAR T

T2EVOLVE-QUALITOP_Sondaggio europeo per pazienti ematologici trattati con terapia CAR-T

2023 ALAN Global Summit

ALAN Global Summit took place from5th to 7th May 2023, in Frankfurt (Germany). More than 40 participants from more than 35 countries attended the event in person.

A welcome and introduction by Zack Pemberton-Whiteley, Chair of ALAN, kicked off the first day. We went around the room and asked each participant to introduce themselves and tell us something about them that people did not know.

ALAN Summit_Agenda

ALAN Summit_Introduction

ALAN Summit_graphic notes

Then, Prof. Philippe Rousselot from France went through a very comprehensive presentation on ALL, from the basics of the disease and symptoms to the complexity of the treatment landscape but also shared some very interesting and promising advances.

ALAN Summit_Medical session ALL

ALAN Summit_Graphic notes_ALL

We then talked about World Leukemia Day and #BeLeukemiaAware campaigns. Zack and Samantha shared information about the important of awareness days and the plans for the 4th of September. We discussed available resources but also new resources coming. We also brainstormed during a “snowball fight” about ideas and what members would like to see in the future!

ALAN Summit_World Leukemia Day

ALAN Summit_Graphic notes_WLD

We ended the day with a chair yoga session led by Samantha.

The second day began with a very timely medical session on AML. Prof. Giovanni Marconi presented an overview of AML and deep dive into treatment landscape and research that is currently being undertaken.

ALAN Summit_Medical session AML

ALAN Summit_Graphic notes_AML

We then went into financial management, with Jan Geissler, who gave us concrete tips and examples.

ALAN Summit_Financial Management
ALAN Summit_Graphic notes_Financial Management

In the afternoon, we had various lively group discussions. We first started with table discussions followed by a panel discussion moderated by Dr Tamas Bereczky on the topic of understanding and reflecting on the possible future directions of patient involvement in drug development. We then split into regional groups to discuss access, clinical, organizational and practical issues and solutions across the various regions. The conversations were summarized to everyone in a plenary session.

ALAN Summit_Patient Involvement in Drug Development

ALAN Summit_Regional Breakouts

ALAN Summit_Graphic notes_Pt involvement in drug dev.

ALAN Summit_Graphic notes_Regional sessions

The final day kicked off with a session dedicated to Healthcare ecosystem and stakeholder management led by Tamas Bereczky.

ALAN Summit_Healthcare system and stakeholders management

ALAN Summit_Graphic notes_Healthcare ecosystem

Zack and Samantha closed the ALAN Global Summit by giving a quick overview of ALAN’s plans in the coming weeks and with a warm thanks to all attendees. It was a truly wonderful event, and everyone involved showed their ongoing passion and commitment to the acute leukemia community.

ALAN Summit_Closing

Thank you to all !


Follow #ALANSUMMIT on social media

All notes –> ALAN Summit_graphic notes

Get ready for EHA 2023 !

The EHA2023 Hybrid Congress offers you an interactive, comprehensive program dedicated to clinical research and practice, basic and translational research, as well as important opportunities for collaboration with stakeholders in the field of hematology. The educational and scientific program will highlight state-of-the-art clinical practice, the latest findings in hematology research, and recent approaches on the diagnosis and treatment of hematologic diseases.

EHA is excited to welcome you live in Frankfurt, Germany from June 8-11, 2023. EHA2023 will also be live stream on the Congress platform from June 8-11, 2023.

Capacity Building

The EHA Patient Advocacy Committee has organised 2 capacity building sessions helping advocates to nagivate the EHA 2023 Congress.

Preparing for EHA –> EHA PAC Webinar Preparing for EHA

Reading scientific posters and articles –> EHA PAC Webinar Reading posters and articles

EHA-Patient Symposium

SESSION 1 Friday 9th June 08:00-09:30   Novel clinical trials in hematology – the comparator   challenge and the need for new formats

Session chair(s): Jan Geissler and Martin Kaiser


1.Patient advocate setting the scene: Jan Geissler, ALAN SC member / EHA PAC

2.Clinical example from myeloma: Martin Kaiser, Institute for Cancer Research / EHA European Affairs Committee

3.Regulatory perspective: Francesco Pignatti, European Medicines Agency

4.HTA perspective – German HTA leader (TBC)

5.Industry perspective – EFPIA Oncology Platform (TBC)

SESSION 2 Friday 9th June 10:00-11:15   From approval to access – optimizing treatments and   appraisals

  Session chair(s): Marie-José Kersten and Zack Pemberton-Whiteley


1.Introduction: clinician’s view on PRO in treatment optimization – Marie-José Kersten, EHA / Amsterdam UMC

2.Case study 1: hemophilia – Declan Noone, European Haemophilia Consortium / EHA PAC

3.Case study 2: malignancies – Zack Pemberton-Whiteley, ALAN / EHA PAC

4.HTA perspective – Camille Thomassin, head of HAS coordination unit on real-word data

5.Industry response – Conny Berlin, Novartis + IMI-PREFER


Collaboration Plaza

Location: Messe Frankfurt, Exhibition Hall / Hall 3.1 Level 1

Plaza participants:

o EHA PAC: 14 Umbrella Patient Organizations


o Networks: ESLHO (EHA SWG), ERN-EuroBloodNet, EuNet-INNOCHRON, HNHCP


We hope to see you in Frankfurt ! 



Webinar: How is the risk classification in AML driving treatment intensity ?


Today we had an educational webinar that gave an overview on how the risk classification in AML is driving treatment intensity. This was based on data generated in the HARMONY project.

We were joined by:

Prof. Dr.Med Lars Bulliger
Director of the Medical Department, Division of Hematology, Oncology, and Tumor Immunology
Charité – Universitätsmedizin Berlin

Jan Geissler
ALAN Steering Committee member












Launch of ALAN Patient Preference Study

After almost 2 years of work, our patient preference study is now launched !


Obtaining a better understanding of the treatment outcomes that matter to people living with acute leukaemia can be useful to guide drug discovery, inform the appraisal of new treatments, and the development of managed access or outcomes-based payment schemes. To date, however, little quantitative preference research has been conducted in this context. This study could help to inform future treatment reimbursement decisions.


The overall aim of this study is to better understand the aspects of treatment that matter most to different groups of acute leukaemia patients. This evidence will help inform the evaluation of treatments now and in the future.

More specifically, the objectives are to:

  1. Better understand relative importance of different aspects of leukaemia treatments and their outcomes to individuals with acute leukaemia
  2. Better understand and characterise the heterogeneity in patients’ preferences based on observed patient characteristics
  3. Support future health technology assessments and promote access to future treatment options, based on the aspects that matter most to patients.

Patient profile

  • Age: 18+ y.o
  • All acute leukemias

ALAN is running one study in patients who are relapsed/ refractory and another study in newly diagnosed patients.


  • UK : Survey link –> click here 
  • US : Survey link -> click here
  • EU4 (France, Germany, Italy, Spain)

Q2 2023: Additional information and data in acute leukemia


Ipilimumab plus decitabine for patients with MDS or AML in posttransplant or transplant-naïve settings: combination IPI + DEC treatment has an acceptable safety profile and has meaningful clinical activity in patients with R/R MDS/AML that does not appear to require T cell–mediated alloreactivity. IPI + DEC treatment may serve as a less-intensive bridge to transplant among potential transplant candidates. Future studies are warranted to identify rational IPI-based treatment strategies to generate prolonged responses without severe immune toxicity. (Ref: https://doi.org/10.1182/blood.2022017686)


Haploidentical hematopoietic cell transplantation with posttransplant cyclophosphamide (PTCy) graft-versus-host-disease (GVHD) prophylaxis yields a similar OS to HLA-matched unrelated donor (MUD) HCT with conventional prophylaxis. A study showed that despite a higher risk of relapse, younger donor haploidentical HCT with PTCy prophylaxis may be preferred over older MUD HCT with conventional prophylaxis in patients with ALL due to lower NRM and better OS. Further analysis comparing the effect of donor age in haploidentical PTCy vs MUD PTCy is warranted. (Ref. https://doi.org/10.1182/bloodadvances.2022009240)

To determine the prognostic significance of central nervous system leukemic involvement in newly diagnosed T-cell T-ALL, outcomes on consecutive, phase 3 clinical trials were examined. (Ref: https://doi.org/10.1182/blood.2022018653)

Key findings:

  • Patients with CNS-1 and CNS-2 status have similar outcomes across 2 large studies with divergent therapies, including with and without CRT.
  • Patients with CNS-3 T-ALL treated with nelarabine had similar OS as CNS-1 and CNS-2, and thus should receive nelarabine as standard of care.

Treatment of CAR-T cell toxicities –> read here