Thalassaemia, a previously fatal childhood genetic disease, can today be effectively prevented and appropriately treated, as a result of medical and scientific advances in the last three decades. However, thalassaemia’s prioritisation on national health agendas and the development of national plans for its effective control in the EU has been hampered by the many challenges involved, mainly related to its rarity and migration.

THALassaemia In Action 2018 (THALIA2018) focuses on Europe, targeting patients with thalassaemia and other haemoglobinopathies, healthcare professionals and policymakers and aims to attain four general objectives, based on TIF’s main pillars of activities:

1. Continue and strengthen the education of patients/parents and healthcare professionals, as well as the patients’ capacity, competency and networking within and across countries and regions of Europe. This is to be achieved via the development of e-learning tools and the launching of capacity building courses and training seminars.

2. Raise awareness on thalassaemia and the importance of optimal care amongst the public at large, as well as among THALIA target groups at national and European level. This will be attained using an array of online tools, activities and publications.

3. Prioritise haemoglobin disorders and their control (prevention and management) at European level. This will be accomplished by establishing and training national patients’ associations in EU priority countries, creating an EU Electronic Health Record and entering into policy dialogue with policymakers at national and European level.

4. Support research programmes and studies focused on the clinical management of Thalassaemia. This is to be achieved via the publication of guidelines on the clinical management of Thalassaemia, participating in scientific conferences and providing medical specialists in priority countries with fellowships.

Knowledge is our power.
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Annually more than 20,000 volunteer unrelated hematopoietic stem cell donations are undertaken. Living donors donate
their cells for patients in need of a transplant. Since 2002 donor safety has become a highly visible issue. In that time WMDA
has started up a reporting system for unrelated hematopoietic stem cell donations. It is important to reassure potential
donors that there are systems in place to protect them from adverse outcomes and that there is a continuous learning
system which is informed by global reporting. The next step to improve the system of reporting is to collaborate with
regulatory authorities in order to be able to disseminate information that has been validated by experts in the field and
regulators. Another next step might be to set up a similar system for donors who donate hematopoietic stem cells for their
family members.

In addition the ICT infrastructure in facilitating an unrelated search for a transplant needs to be upgraded in order to speed up the process to find a suitable stem cell source for a patient in need of a transplant. WMDA strives to accelerate the search and match process by improving the underlying ICT infrastructure, to ensure full traceability of stem cells from donor to transplant by implementing a global donor ID-number and to collect more information so that better matching results can be accomplished.

Unfortunately, not for each patient a match can be found, WMDA will strive to identify the gap and develop focused recruitment strategies for populations where patient need is growing.

To reduce the administrative burden on organisations facilitating transplants WMDA will work on tools to share knowledge on the import from hematopoietic stem cells from third countries.
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Thalassaemia, a previously fatal childhood genetic disease, can today be effectively prevented and appropriately treated, as a result of medical and scientific advances in the last three decades. However, thalassaemia’s prioritisation on national health agendas and the development of national plans for its effective control in the EU has been hampered by the many challenges involved, mainly related to its rarity and migration.

THALassaemia In Action 2019 (THALIA2019) focuses on Europe, targeting patients with thalassaemia and other haemoglobinopathies, healthcare professionals and policymakers and aims to attain four general objectives, based on TIF’s main pillars of activities:

1. Continue and strengthen the education of patients/parents and healthcare professionals, as well as the patients’ capacity, competency and networking within and across countries and regions of Europe. This is to be achieved via the development of e-learning tools and the launching of capacity building courses and training seminars.

2. Raise awareness on thalassaemia and the importance of optimal care amongst the public at large, as well as among THALIA target groups at national and European level. This will be attained using an array of online tools, activities and publications.

3. Prioritise haemoglobin disorders and their control (prevention and management) at European level. This will be accomplished by establishing and training national patients’ associations in EU priority countries, creating an EU Electronic Health Record and entering into policy dialogue with policymakers at national and European level.

4. Support research programmes and studies focused on the clinical management of Thalassaemia. This is to be achieved via the publication of guidelines on the clinical management of Thalassaemia, participating in scientific conferences and providing fellowships to medical specialists.

Knowledge is our power.


Thalassaemia, a previously fatal childhood genetic disease, can today be effectively prevented and appropriately treated, as a result of medical and scientific advances in the last three decades. However, thalassaemia’s prioritisation on national health agendas and the development of national plans for its effective control in the EU has been hampered by the many challenges involved, mainly related to its rarity and migration.

THALassaemia In Action 2020 (THALIA2020) focuses on Europe, targeting patients with thalassaemia and other haemoglobinopathies, healthcare professionals and policymakers and aims to attain four general objectives, based on TIF’s main pillars of activities:

1. Continue and strengthen the education of patients/parents and healthcare professionals, as well as the patients’ capacity, competency and networking within and across countries and regions of Europe. This is to be achieved via the development of e-learning tools and the launching of capacity building courses and training seminars.

2. Raise awareness on thalassaemia and the importance of optimal care amongst the public at large, as well as among THALIA target groups at national and European level. This will be attained using an array of online tools, activities and publications.

3. Prioritise haemoglobin disorders and their control (prevention and management) at European level. This will be accomplished by establishing and training national patients’ associations in EU priority countries, creating an EU Electronic Health Record and entering into policy dialogue with policymakers at national and European level.

4. Support research programmes and studies focused on the clinical management of Thalassaemia. This is to be achieved via the publication of guidelines on the clinical management of Thalassaemia, participating in scientific conferences and providing fellowships to medical specialists.

Knowledge is our power. Unity is our strength.
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WMDA strives that patients worldwide have equal access to high quality cells for transplantation from donors whose rights and safety are protected. To achieve this the WMDA has implemented a strategic plan for the years 2018-2021.
As an organisation that exists to achieve the best for stem cell donors and transplant patients, the strategy has been co-created with affiliate organisations. The strategy aims to deliver impact in the following areas:
- Optimising ‘search, match and connect’
- Supporting global development
- Promoting donor care
- Ensuring quality

The WMDA aims to facilitate the best possible stem cell source for transplant patients, while the rights and safety of the donors are promoted and protected. This is achieved by:
- setting up a good infrastructure to facilitate communication
- developing education programmes to share best practices
- maintain a platform to report serious adveres events and reactions in as well donors as patients
- promote accreditation and standardisation through the accreditation programme



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