Resource Library

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

Advocacy, Diversity, Equity & Inclusion, Understanding Rare Disease

Published December 13, 2021

Health Equity and Rare Disorders (Part 1)

Advocacy, Diversity, Equity & Inclusion, Understanding Rare Disease

Published March 2, 2022

Advancing Health Equity in Rare Healthcare (Part 2)

Advocacy, Diversity, Equity & Inclusion, Understanding Rare Disease

Published May 5, 2022

Walk in Our Shoes: The Experience of Rare Disease Patients (Part 3)

Advocacy, Diversity, Equity & Inclusion, Understanding Rare Disease

Published March 5, 2021

Advancing Health Equity: A Community Conversation for Rare Disease Day

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

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