People with Rare Diseases need faster Diagnoses and better Treatment Options
Around four million people in Germany are living with a rare disease, but they and their families often face major hurdles: long diagnosis paths, inadequate treatment options and a lack of social recognition make everyday life difficult. “It is our task to strengthen the voice of those affected and to advocate for fairer care,” says patient representative Stefan Schwartze. Diagnoses must be made faster, innovative therapies must be made more accessible and the special needs of patients must be taken into account. Rare diseases must not be overshadowed by public attention – the lives and health of millions of people are at stake.
More Research, better Networking, targeted Support
The Eva Luise and Horst Köhler Foundation has been working for people with rare diseases for almost twenty years. Together we can achieve a lot,” says Prof. Dr. Annette Grüters-Kieslich, Chairwoman of the Foundation. “We urgently need more research, better networking and targeted support for patients and their families. People don’t have time to wait!”
Start of a Training Series on Rare Diseases
An important step towards better medical care is the launch of a new CME training series for medical professionals on 28 February 2025. The training, initiated by the Eva Luise and Horst Köhler Foundation, is aimed in particular at general practitioners and paediatricians. Practical webinars will provide up-to-date expertise, illustrative case studies and networking opportunities. Further information (German) is available at: https://elhks.de/cme-fortbildung-seltene-erkrankungen-auftakt/
