We are DEGETHA & FRIENDS!
DEGETHA & FRIENDS is where you should be if you are affected by a rare disease.
Our association was founded in 2014 by people living with a medical condition called thalassemia. Thalassemia (Greek for Mediterranean anemia) is a rare disease that causes the bone marrow to produce defective red blood cells.
There are many different rare diseases in the world (over 8,000), but all have one thing in common: to master a lifetime of issues that people don’t often talk about. Issues that also affect a person’s mental health.
Depression. Loneliness. Poor communication with doctors. Issues during puberty. Issues at work. Fears. Intolerance. Ignorance. Poor compliance with medications. Lack of perspective and hope. A rare disease can lead to all of this, but it doesn’t have to.
In addition, as DEGETHA & FRIENDS we stand for values, which positively supports 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.
We offer experience and knowledge in different areas, such as medicine, psychology, children, family and work. We ensure this through our authenticity. At least 50% of DEGETHA & FRIENDS board always consists of personally affected members. We are differently qualified experts who do not just assume to know what it’s like to live with a rare disease. Most of us actually live with a rare disease.
You and us. Together. Strong.