Taking part

People Panel B_2x2_Rare DiseasesThe NIHR BioResource – Rare Diseases is a BioResource recruiting participants with rare diseases, and their relatives. This is a unique opportunity to utilise the latest in genotyping and phenotyping technologies to identify the genetic cause of disease.

Participants will be making a major contribution to research  which will improve understanding of the disease which in turn leads to better treatments and prevention for future generations.

Useful links

Please use the links provided below to find more information about rare diseases

Rare Disease UK                 A national alliance of people with rare diseases and all who support them
Orphanet (UK and Ireland)   Provides a searchable database of rare disorders, clinical trials, diagnostic tests and patient organisations
Eurordis                            A patient-driven alliance of patient organisations and individuals active in the field of rare diseases, dedicated to improving the quality of life of all people living with rare diseases in Europe
Contact a Family                Provides information on medical conditions, including rare disorders and contact details for UK support groups