Collaboration between AESCOV and The Ehlers-Danlos Society

The Ehlers-Danlos Society is a global organization dedicated to advancing and accelerating research and education on Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). It supports the development of effective and equitable therapies for EDS and HSD and works collaboratively to improve the lives of those affected by these conditions.

Collaboration between AESCOV and Association Espoir de Noisette (Association of Vascular Compression Syndromes in France).

The French association Espoir de Noisette was created to support, inform, raise awareness, and contribute to improving the care and management of patients suffering from Nutcracker, Cockett/May-Turner, Wilkie, and Dunbar compression syndromes, including promoting medical research.

Collaboration between AESCOV and ANSEDH

The National Association of Ehlers-Danlos Syndrome and Hypermobility is dedicated to stimulating and promoting scientific research on Ehlers-Danlos Syndrome and its consequences. It also seeks to raise awareness among the public and public and private institutions about the problems that this disease causes in affected individuals, families, and society.

Collaboration between AESCOV and ORPHANET.

Orphanet is the reference information portal on rare diseases and orphan drugs, aimed at both professionals and patients. Its objective is to contribute to the improvement of the diagnosis, care, and treatment of those affected by these conditions. It was founded in France by INSERM in 1997, and its administrative offices are located in Paris. The Orphanet website allows searching for any rare disease through its name, implicated gene, coding in the ICD-11 (the WHO International Classification of Diseases manual), Orphanet nomenclature on rare diseases (ORPHA code), or the OMIM code (online catalog of human genes and genetic disorders). AESCOV is registered in Orphanet:

Collaboration between AESCOV and EURORDIS.

The European Organization for Rare Diseases (EURORDIS) is the voice of 30 million people affected by rare diseases across Europe. EURORDIS is a non-governmental alliance driven by patient organizations and individuals active in the field of rare diseases in Europe. EURORDIS represents 695 rare disease patient organizations in 63 countries, covering over 4,000 rare diseases.