Dr. Köhler, why do children with rare diseases need specialized medical networks?
Because rare diseases are usually complex and require an interdisciplinary approach. They are also so uncommon that most doctors, if at all, only know a handful of the over 8,000 rare diseases. In our research initiative Alliance4Rare, we are pooling knowledge and strengthening pediatric research in the field of rare diseases.
What does a rare disease mean for families?
It often turns life upside down. Affected children spend a lot of time in examinations and hospitals. Parents often become caregivers and experts, and siblings also do their part. If you want to learn how to face the greatest challenges, you can learn from these families. The families are incredibly strong and at the same time need reliable support: through specialized centers, sharing with other affected families, and through a society that pays attention and rolls up its sleeves.
How does the foundation specifically support people with rare diseases?
By promoting, connecting, and raising awareness: We initiate innovative research, bring together medical expertise nationwide, and represent the interests of affected people in politics and the public. With initiatives such as the National Register for Rare Diseases (NARSE) and targeted training programs, we are strengthening knowledge and care structures.
Source: Hanse Merkur
