Resource Library Search Results

Research & Drug Development, Understanding Rare Disease

Published August 3, 2022

Drug Development for Rare Diseases: A Community Conversation

Research & Drug Development, Understanding Rare Disease

Published August 16, 2021

Genetic Counseling for Rare and Undiagnosed Conditions

Understanding Rare Disease

Published June 2, 2021

Oral Health and Rare Disorders

Understanding Rare Disease

Published March 30, 2021

The Rare Sibling Experience

COVID-19, Understanding Rare Disease

Published August 20, 2020

Impact of the COVID-19 Pandemic on the Rare Disease Community

COVID-19, Understanding Rare Disease

Published April 2, 2022

A Rare Response: Addressing the COVID-19 Pandemic

Genetic Testing, Research & Drug Development, Understanding Rare Disease

Published August 31, 2018

Genetic Testing 101 for People with Rare Diseases

Understanding Rare Disease

Published June 26, 2019

How Specialty Pharmacies Support the Rare Community

Understanding Rare Disease

Published January 18, 2022

Aging with a Rare Condition

Research & Drug Development, Understanding Rare Disease

Published January 14, 2022

Rare Breakthroughs: Now and On the Horizon

Understanding Rare Disease

Published November 26, 2021

Rare in the Family: Navigating the Role of Patient, Parent and Caregiver

Understanding Rare Disease

Published June 26, 2022

The 2022 Rare Impact Awards

Understanding Rare Disease

Published November 15, 2019

10 Things You May Not Know About Rare Diseases

Get Involved, Understanding Rare Disease

Rare Disease Patient Stories

Get Involved, Legislative Advocacy

Published December 1, 2016

What is the Rare Action Network?

Understanding Rare Disease

Published January 1, 2023

Rare Disease Facts

Gene Therapy, Understanding Rare Disease

Published March 1, 2022

Understanding the importance of gene therapy for rare diseases

Legislative Advocacy, Understanding Rare Disease

Published November 19, 2020

Barriers to Rare Disease Diagnosis, Care and Treatment in the U.S.: A 30-Year Comparative Analysis

Diversity, Equity & Inclusion, Get Involved, Understanding Rare Disease

Published October 1, 2020

Ensuring Access to Telehealth for Rare Disease

Membership

Herramientas de RareLaunch (Taller de Diciembre 2020)

Membership

RareLaunch Toolkit (December 2020 Workshop)

Advocacy, Legislative Advocacy, Rare Disease Advisory Councils (RDAC)

Toolkit: Implementing a Rare Disease Advisory Council in Your State

*Requires form submission to access

Advocacy, Legislative Advocacy, Rare Disease Advisory Councils (RDAC)

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

Advocacy, Legislative Advocacy, Rare Disease Advisory Councils (RDAC)

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

Recorded: January 13, 2021

Understanding Rare Disease

Published November 1, 2020

2020 Rare Diseases Report: Rheumatology