Resource Library

Gene Therapy, Research & Drug Development, Understanding Rare Disease

Published September 19, 2019

Gene Therapy Yesterday, Today and Tomorrow

Advocacy, Understanding Rare Disease

Published August 6, 2019

Self-Advocacy and Care Coordination

Understanding Rare Disease

Published June 26, 2019

How Specialty Pharmacies Support the Rare Community

Understanding Rare Disease

Published June 26, 2019

Generic Drugs and Biosimilars

Advocacy, Insurance, Research & Drug Development, Understanding Rare Disease

Published January 18, 2019

How to Make Your Health Insurance Work For You

Understanding Rare Disease

Published November 15, 2019

10 Thing You May Not Know About Rare Diseases

Understanding Rare Disease

Published March 28, 2019

10 Tips for Newly Diagnosed Rare Disease Patients and Caregivers

Understanding Rare Disease

Published November 8, 2019

Pediatric Movement Disorders: Guidance for Parents and Physicians

Understanding Rare Disease

Published June 27, 2021

Working While Rare

Research & Drug Development, Understanding Rare Disease

Published August 3, 2022

Drug Development for Rare Diseases: A Community Conversation

Get Involved, Research & Drug Development, Understanding Rare Disease

Published December 9, 2021

Patient Focused Drug Development – How RDCA-DAP Can Help

Advocacy, Get Involved

Published November 21, 2021

Rare Disease Advisory Council Stakeholders Meeting

Rare Cancer, Understanding Rare Disease

Published October 7, 2021

Rare Cancers: Breaking Down Barriers to Diagnosis, Treatment and Research

Research & Drug Development, Understanding Rare Disease

Published August 16, 2021

Genetic Counseling for Rare and Undiagnosed Conditions

Research & Drug Development, Understanding Rare Disease

Published June 25, 2021

Advancing Research Through the Global PNH Patient Registry