Patient Advocacy Groups

Discover communities and groups dedicated to supporting those impacted by serious chronic diseases and undergoing chronic blood transfusions, used as supportive care. Find out more below.

Blood Cancer Association

The Blood Cancer Association exists for those affected by blood cancer or other serious blood disease, relatives and staff in hematology. The association is a non-profit nationwide patient organization that is a member of the interest-policy umbrella organizations Funktionsrätt Sverige och Nätverket mot Cancer.

DEGETHA & FRIENDS (German Society of Thalassemia and all rare diseases)

DEGETHA & FRIENDS is a German organisation that positively supports mental health for all those affected by rare diseases.

The Federation of Sickle Cell and Thalassemic Patients SOS GLOBI

The French Federation of Sickle Cell and Thalassemia Patients’ organisations SOS GLOBI brings together 19 local associations supporting patients and families affected by these two genetic red blood cell diseases.

Greek Thalassaemia Federation (EOTHA)

The Greek Thalassaemia Federation (E.O.THA.) brings together the 26 local Thalassaemia Associations of the country and represents 5,000 patients and their families.

LyLe – Danish Patient Association for Lymphoma, Leukemia and MDS

LyLe is a patient association for people affected by lymphoma, leukemia or MDS – directly as patients or indirectly as relatives.

MDS Alliance

The MDS Alliance are an umbrella organisation that aims to ensure MDS patients, regardless of where they live, have access to the best multi-professional care.

SAM (Association for rare anaemias in Germany)

SAM Deutschland e.V. is a patient organization for children and adult sufferers with (chronic) rare diseases, such as thalassemia, Diamond Blackfan, sickle cell anaemia/sickle cell disease and transfusion-related iron overloads, as well as their relatives.

MDS Patient Interests Community

The MDS Patient Interests Community is an association of patients, relatives, friends, nurses and doctors in Germany.

Thalassaemia International Federation (TIF)

The Thalassaemia International Federation (TIF) is a non-profit, non-governmental organisation founded in 1986 by a small group of patients and parents in Cyprus, Greece, the UK, the USA and Italy.  Today enjoying a membership of over 200 national patient and patient advocacy organizations in more than 60 countries  worldwide.

United Onlus – Italian Federation of Thalassemia, Rare Hemoglobinopathies and Drepanocytosis

United Onlus gives unitary representation to local and regional organizations to protect patients with Thalassemia, Drepanocytosis and rare anaemias before national and international institutions and in order to provide them and their families with global assistance, protecting their right to health, access to care, social equality and job opportunities.