European Organisation for Rare Disorders (EURORDIS)
Promotion of rare disease research, access to new therapies, and participation of informed patients in policy-making.
Rare Connect Behçet’s Syndrome Community
Rare Connect is a partnership of EURORDIS and NORD (National Organization for Rare Diseases). It provides a global forum for patients with rare diseases to connect with each other.
International Society for Behçet’s Disease
A medical based group bringing together clinicians from all over the world the International Society for Behçet’s Disease (ISBD) (derived from the activities of the International Study Group for Behçet’s Disease formed in 1977) was established at the 9th International Conference on Behçet’s Disease, Seoul, May 2000.
RITA European Reference Network
In 2017 EU Behçet’s Patients came together with a group of EU Clinicians and decided to support one another in asking for Behçet’s to be part of the European Reference Network of Rare Diseases.
Behçet’s applied to be included in the Rare, Auto inflammatory disorders and Immune disease – named RITA and was successful.
This is the RITA European Reference Network (ERN) website: http://rita.ern-net.eu/
The three centres of excellence for Behçet’s in the UK, together with Holland and France have hospitals in the RITA network for Behçet’s It is hoped more Centres dealing with Behçet’s in the EU will be able to join over time and improve the access, treatment and research for people living with Behcets.
An overview of the ERN can be found on this link http://europa.eu/!kd34rM