Solidarity with medicine’s orphans
Better treatment options for people with rare diseases - that's the goal of the Eva Luise und Horst Köhler Foundation. The Foundation also aims to improve access to modern diagnostic procedures and develop specialized infrastructure for research and medical care. In Germany alone, more than 4.5 million people – many of whom are children - are affected by rare diseases. They are known as “medicine’s orphans” because no specific treatments are available for most rare diseases. The Foundation has launched a visionary care and research network for rare diseases in children and adolescents with its Alliance4Rare research initiative.
For most patients with rare diseases, no satisfactory treatment options are available and only symptomatic treatment is possible.
On average it takes 5 years for people with rare diseases to be correctly diagnosed. For many of them, these years are spent on a long, stressful odyssey from hospital to hospital in search of adequate medical attention. Often, whole families are affected because many rare diseases are already apparent in childhood.
Alongside many other projects, the Foundation has established the Alliance4Rare research network to focus the expertise of Germany’s leading university pediatric departments. The network sees itself as a model for the future of pediatric research in Germany.
