Resource Library

Understanding Rare Disease

Published May 1, 2020

How to Prepare for Your Telehealth Appointment

Gene Therapy, Understanding Rare Disease

Published March 1, 2022

Understanding the importance of gene therapy for rare diseases

Understanding Rare Disease

Published November 14, 2018

Open Enrollment for Health Insurance

Legislative Advocacy, Understanding Rare Disease

Published August 14, 2018

Emergency Medical Protocols 101: Stories & Tools for Effective Advocacy

Get Involved, Legislative Advocacy, Research & Drug Development

Published June 18, 2018

What Everyone Affected by a Rare Disease Should Know About the Orphan Drug Act

Get Involved, Legislative Advocacy, Regulatory

Published May 13, 2018

Policy 101: Role of Government on Rare Disease Policy

Research & Drug Development, Understanding Rare Disease

Published May 23, 2018

Patient Registries: What They Are and How to Start One

Research & Drug Development, Understanding Rare Disease

Published May 4, 2022

Post-Transplant Lymphoproliferative Disease Externally-Led PFDD

Research & Drug Development, Understanding Rare Disease

Published November 12, 2021

Navigating Insurance, Social Security Disability & Patient Assistance Programs

Understanding Rare Disease

Published November 22, 2021

Coping with Grief and Anticipatory Grief

Research & Drug Development, Understanding Rare Disease

Published January 14, 2022

Getting Involved in Clinical Research: Finding and Preparing for Clinical Trials

Understanding Rare Disease

Published January 18, 2022

Aging with a Rare Condition

Diversity, Equity & Inclusion, Research & Drug Development, Understanding Rare Disease

Published November 24, 2021

The Intersection of Race, Ethnicity & Equity with Diagnosis & Treatment Access

Research & Drug Development, Understanding Rare Disease

Published January 14, 2022

Rare Breakthroughs: Now and On the Horizon

Understanding Rare Disease

Published January 18, 2022

Palliative Care: Debunking the Myths