Resource Library

Research & Drug Development, Understanding Rare Disease

Published June 2, 2020

What is a Registry?

Get Involved, Understanding Rare Disease

Personal Stories from the New Era of Patient Advocacy

Get Involved, Understanding Rare Disease

Rare Disease Patient Stories

Get Involved, Legislative Advocacy

Published December 1, 2016

What is the Rare Action Network?

Get Involved, Legislative Advocacy

Published December 1, 2016

How to Meet with Your Legislator

Get Involved, Legislative Advocacy

Published December 1, 2016

Legislative Process

Get Involved, Legislative Advocacy

Published December 1, 2016

What you need – legislative visit mateirals

Get Involved, Legislative Advocacy

Published December 1, 2016

State vs. Federal Government

Get Involved, Legislative Advocacy

Published December 1, 2016

How to write an effective speech

Get Involved, Legislative Advocacy

Published December 1, 2016

Why become an advocate?

Gene Therapy, Research & Drug Development, Understanding Rare Disease

Genome Editing: Q&A for Patients and Caregivers

Understanding Rare Disease

Published January 1, 2023

Rare Disease Facts

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