Rare Disease Resource Library

Advocates, Fundraising, Patient & Caregiver, Students & Volunteers, Advocacy, Get Involved, Legislative Advocacy, Rare Disease Day,

April 29, 2024

National Volunteer Month Webinar

Advocates, Patient & Caregiver, Insurance, Legislative Advocacy, Regulatory, Webinar, Policy,

November 27, 2023

Medicaid Unwinding

Advocates, Patient & Caregiver, Patient Organizations, Advocacy, Legislative Advocacy, Policy,

April 14, 2023

Rare Disease Patients and the Inflation Reduction Act

Advocates, Medical Professionals, Patient Organizations, Students & Volunteers, Advocacy, Legislative Advocacy, Research & Drug Development, PDF, Publication, Education, Policy,

October 17, 2022

Study on Orphan Drug Costs & Use

Advocates, Patient Organizations, Students & Volunteers, Advocacy, Legislative Advocacy, Rare Disease Advisory Councils (RDAC), Educational Video, Webinar, Policy,

Webinar Recording: Your State Just Enacted an RDAC – Now What?

Advocates, Patient Organizations, Students & Volunteers, Legislative Advocacy, Rare Disease Advisory Councils (RDAC), PDF, Policy,

Toolkit: Advocating for a Rare Disease Advisory Council in Your State

Advocates, Patient Organizations, Students & Volunteers, Advocacy, Legislative Advocacy, RDCA-DAP, PDF, Policy,

RDCA: What is it and What are its Core Components?

Advocates, Medical Professionals, Patient & Caregiver, Patient Organizations, Students & Volunteers, Advocacy, Legislative Advocacy, RDCA-DAP, Research & Drug Development, Infographic, PDF, Education,

5 Steps to Drug Development Brochure

Advocates, Patient Organizations, Students & Volunteers, Advocacy, Legislative Advocacy, Rare Disease Advisory Councils (RDAC), Educational Video, Webinar, Policy,

October 14, 2022

Webinar Recording: Create a Rare Disease Advisory Council in Your State

Advocates, Patient Organizations, Students & Volunteers, Advocacy, Legislative Advocacy, Rare Disease Advisory Councils (RDAC), Educational Video, Webinar, Policy,

Webinar Recording: Advocating for a Rare Disease Advisory Council in your State