We are DEGETHA & FRIENDS!
DEGETHA & FRIENDS is the contact person for all those affected by a rare disease.
Our association was founded in 2014 by members who are 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: we have to master issues, during an entire lifetime, which people don’t talk about most of the time. Issues that also affects the Mental Health.
Depressions. Loneliness. Poor communication with doctors. Issues during puberty. Incomprehension. Issues at work. Fears. No contact persons. Intolerance. Bad compliance. Lack of perspectives. A Rare Disease can lead to all of this, but it does not have to.
In addition, as DEGETHA & FRIENDS we stand for our values, which also positively support Mental Health.
To increase patient competence | To provide information | To support a worldwide network
We support affected persons, family members, physicians, clinics, associations, organizations and research institutions.
In different areas (such as medicine, psychology, children, family, work) we offer experience and knowledge. 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, because they are also self-affected and know (do not just assume) how it is like to live with a rare disease.
You and us. Together. Strong.