Resource Library

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

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