DEGETHA stands for German Society for Thalassaemia and is the first point of contact for all sufferers of Thalassaemia. The Thalassaemia (Greek for Mediterranean anemia) is an inheritable disease that leads to a faulty blood formation. The disease most commonly occurs in former malaria areas of the Mediterranean. We stand for our values, representing our objectives at the same time as DEGETHA - Increase patient competence - Provide information - Support Network We help to sufferers, family member, health professionals, clinics, registered associations, organisations and research institutions.

Errungenschaften

Team
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Unser Angebot

We started in 2014 with an international team and up to now we are very succesful, with national and international cooperations (i. a. with Clinics, Universities, Biotech and Pharmaceutical Companies) and a six digit fundraising sum.

We offer different roles for different voluntary activities:

Backoffice, Patient Advocate, Physicians, IT Developer, IT Manager, Web Designer, Translator, Finance Administrator (like Treasurer), Project Manager, Trainer, Coach, Marketing, and many more (just ask us, if you like to know more).

Zielgruppe

Every volunteer who likes to support people who has to live a life long with a severe handicap, Patients, Relatives, Associations, Doctors, Clinics, Universities, Phamaceutical Companies, Biotech Companies, Non-Profit Organizations, Health Insurances, Health Care (in general), Press, Government.

Herausforderungen

We are going to hold the first national Symposium about Thalassaemia on 1st of October 2016. Afterwards we are going to start with our patient competence improvement training s all over Germany. Probably we will extend this europe wide.

Unsere Story

It's my own story. I was born in 1976 with thalassaemia major and had a expectancy of life of 20 to 25 yrs. Next month I am going to celebrate my 40th birthday and I am giving all what I learned to other people, who has a handicap, since I am a patient advocate (now more than 20 yrs.).

Hauptsitz