organizationHealthcare

Rare Diseases International

An organization focused on rare diseases.

Rare Diseases International is an organization dedicated to rare diseases.

Further details regarding its governance and founding are currently being verified.

Ideas that could help Rare Diseases International

Global IMD Transplant Harmonization Registry
A multicenter digital platform to standardize liver transplantation protocols and quality-of-life endpoints for patients with inherited metabolic diseases.
Why it helps: This platform would provide patient advocacy groups with concrete data on how LTx improves quality of life beyond simple survival rates.