Published August 14, 2018
Resource Library
Published June 18, 2018
What Everyone Affected by a Rare Disease Should Know About the Orphan Drug Act
Published May 13, 2018
Policy 101: Role of Government on Rare Disease Policy
Published May 23, 2018
Patient Registries: What They Are and How to Start One
Published May 4, 2022
Post-Transplant Lymphoproliferative Disease Externally-Led PFDD
Published November 12, 2021
Navigating Insurance, Social Security Disability & Patient Assistance Programs
Published November 22, 2021
Coping with Grief and Anticipatory Grief
Published January 14, 2022
Getting Involved in Clinical Research: Finding and Preparing for Clinical Trials
Published January 18, 2022
Aging with a Rare Condition
Published November 24, 2021
The Intersection of Race, Ethnicity & Equity with Diagnosis & Treatment Access
Published January 14, 2022
Rare Breakthroughs: Now and On the Horizon
Published January 18, 2022
Palliative Care: Debunking the Myths
Published November 26, 2021
Rare in the Family: Navigating the Role of Patient, Parent and Caregiver
Published November 24, 2021
Building Resilience in a Time of Unknowns
Published March 21, 2021