Ehlers-Danlos Organisation e.V.

Ehlers-Danlos Organisation e.V. is a German organization dedicated to supporting people affected by Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD), as well as their families and anyone seeking information. Its central aim is to strengthen peer support and help people share knowledge and practical experience for managing everyday life with these conditions.

The organization provides accessible information on EDS and HSD, including medical knowledge, research, diagnostic pathways, guidelines, and useful resources. It promotes awareness through its website and social media, and offers educational materials, articles, videos, talks, and a podcast featuring information and personal experiences. Members can join an online consultation with experts, while open online gatherings and regional meetings provide opportunities for conversation and mutual support.

The organization also arranges events, workshops, and lectures, and connects patients with healthcare professionals and researchers. Through collaboration with medical societies, universities, clinics, and other organizations, it supports research and efforts to improve diagnosis, treatment, and care. Its work is grounded in expertise, lived experience, and community empowerment.