Resource Library

Research & Drug Development, Understanding Rare Disease

Published June 25, 2021

Advancing Research Through the Global PNH Patient Registry

Advocacy, COVID-19, Regulatory, Research & Drug Development, Understanding Rare Disease

Published June 21, 2021

Continuing the Conversation: FDA and CDC Leaders Discuss the COVID-19 Pandemic and Vaccines

Understanding Rare Disease

Published June 2, 2021

Oral Health and Rare Disorders

Advocacy, Diversity, Equity & Inclusion

Published May 28, 2021

Grow and Diversify Your Board: When, Why and How

Understanding Rare Disease

Published April 27, 2021

Transitioning to Adult Care

Understanding Rare Disease

Published March 30, 2021

The Rare Sibling Experience

Get Involved, Research & Drug Development, Understanding Rare Disease

Published January 22, 2021

Advantages of the HOME Study for Metachromatic Leukodystrophy