Find here helpful, up-to-date and trustful sources of information
ADVOCACY CORNER
Setting up and/or running a patient organization is a challenging venture. It encompasses many actions or steps:
- Research and identify unmet needs.
- Define your mission and goals and develop a strategic plan.
- Establish and manage legal & financing structures.
- Build and manage a dedicated team.
- Build your advocacy strategy and engage stakeholders.
- Develop a communication strategy.
- Contribute to clinical trial design and drug evaluation.
Thankfully multiple sources of information, databases and trainings have been developed by patient groups or public-private initiatives to support patient organisation managers and advocates. We recommend you draw on what is currently available to start developing your own strategies, processes, and tools. It will save you valuable time and effort.
Check out the existing resources which we are aware of in our Advocacy Corner
TRUSTFUL SOURCES OF INFORMATION
Information on acute leukemia: ALAN Acute Leukemia training
You can find a lot of very good and up-to-date information on the websites from ALAN’s members. Click here –> https://acuteleuk.org/membership/members/
In addition, ALAN recommends the following sources of information:
Know AML
The mission of Know AML is to raise awareness and education in AML to patients, carers, families, healthcare professionals and the general public.
Know ALL
The mission of Know ALL is to raise awareness and education in AML to patients, carers, families, healthcare professionals and the general public.
Beatcancer.eu
This is the Europe's largest online communities focused on cancer patients and survivors. From relationships and emotional well-being to nutritional tips, the platform is a haven for those in need.
SCIENTIFIC INFORMATION
European Hematology Association
Promotes excellence in patient care, research and education in hematology.
American Society of Hematology
The world's largest professional society serving both clinicians and scientists around the world who are working to conquer blood diseases.
EBMT
The European Society for Blood and Marrow Transplantation was established in order to allow scientists and physicians involved in clinical bone marrow transplantation to share their experience and develop co-operative studies.
WBMT
The WBMT is a non profit scientific organization with the mission to promote excellence in stem cell transplantation, stem cell donation and cellular therapy.
ALL Hub
The ALL Hub is an open-access online resource, dedicated to providing balanced, credible, and up-to-date medical education on ALL. The aim is to enhance knowledge in ALL, through the multichannel dissemination of global advances related to its classification, diagnosis, treatment, and management.
The ALL Hub shares new data, evidence-based articles, therapy approvals, expert opinions, and international congress coverage to treatment teams and researchers around the world.
AML Hub
The AML Hub is an open-access online resource dedicated to providing balanced, credible, and up-to-date medical education on AML. The aim is to enhance knowledge in AML through the multichannel dissemination of global advances related to its classification, diagnosis, treatment, and management.
The AML Hub shares new data, evidence-based articles, therapy approvals, expert opinions, and international congress coverage to treatment teams and researchers around the world.
European School of Haematology
Not-for-profit institution for continuing education founded in 1985 to promote and facilitate access to state-of-the-art and cutting-edge knowledge in haematology and related disciplines at the European level.
The British Society for Haematology
Bringing haematology professionals together since 1960 to transform the care we provide to patients. With over 1700 members worldwide, we are the largest UK haematology organisation and the only society to cover all aspects of the specialty.
Leukemia Net
Leukemia Net is the first Foundation acting internationally with the aim to cure leukemia.
EuroBloodNet
Initiative aiming to tackle complex or rare diseases and conditions that require highly specialised treatment and a concentration of knowledge and resources.
Leuka
Leuka supports the work of dedicated scientists and clinicians who are committed to providing the best treatment possible and undertaking the most advanced research into leukemia and related disorders. They collaborate nationally and globally, for the greater benefit of patients here and abroad.
VJHemOnc
The Video Journal of Hematological Oncology (VJHemOnc) is a global, open-access video journal, dedicated to providing trusted and up-to-date medical information in order to improve the awareness and understanding of hematological cancers.