About DEGETHA e. V.
DEGETHA & FRIENDSÂ was founded in 2014 by members affected by thalassemia. Thalassemia (Greek for Mediterranean anemia) is a rare disease that leads to defective blood formation.
There are many different rare diseases (over 8000), but we all have one thing in common: throughout our lives we have to deal with problems that are often not talked about. Problems that also affect mental health.
Depressions. Lonliness. Poor communication with doctors. problems in puberty. incomprehension. problems at work. Fears. No contact persons. Intolerance. Bad compliance. Lack of perspective. A rare disease can lead to all of this, but it doesn’t have to.
In addition, as DEGETHA & FRIENDS we stand for our values, which also positively support mental health.
Increasing patient competence | provide information | promote network
We support those affected, family members, doctors, clinics, associations, organizations and research institutions.
We offer experience and knowledge in different areas (e.g. medicine, psychology, children, family, work). We ensure this through our authenticity. The board of DEGETHA & FRIENDS always consists of at least 50% self-affected members. Our team consists of differently qualified experts, as they are also self-affected and know (not suspect) what it is like to live with a rare disease (SE).
As a patient organization for thalassemia and all rare diseases, our goal for the RARE DISEASE DAY is to strengthen the mental health of all those affected with counseling, coachings, webinars and trainings.