Rare Disease Resource Library

Patient & Caregiver, Advocacy, Understanding Rare Disease, PDF, Education,

July 28, 2026

Clinical Trials Frequently Asked Questions

Patient & Caregiver, Advocacy, Understanding Rare Disease, PDF, Education,

April 28, 2026

Glossary of Clinical Research Terms

Patient Organizations, Patients & Caregivers, Genetic Testing, Understanding Rare Disease, Educational Video, Education,

October 16, 2024

Why Should I Get Genetic Testing If I Already Have a Diagnosis?

Get Involved, Rare Cancer, Understanding Rare Disease,

October 6, 2023

Rare Cancer Day Webinar 2023 – Companion PowerPoint

Get Involved, Rare Cancer, Understanding Rare Disease, Webinar, Education, Membership,

Rare Cancer Day Webinar 2023

Forming a Foundation, Patient & Caregiver, Patient Organizations, Students & Volunteers, Get Involved, Understanding Rare Disease, PDF, Membership,

October 20, 2022

Finding & Connecting with Others in the Rare Community

Advocates, Patient & Caregiver, Patient Organizations, Students & Volunteers, Advocacy, Research & Drug Development, Understanding Rare Disease, Infographic, PDF, Publication, Education,

October 17, 2022

NORD RareInsights^® 5 Myths About the ODA

Advocates, Patient Organizations, Advocacy, Regulatory, Telehealth, Understanding Rare Disease, PDF, Publication, Education,

NORD RareInsights^® Ensuring Access to Telehealth for Rare Diseases

Medical Professionals, Understanding Rare Disease, PDF, Education,

Huntington’s Disease: Emerging Concepts in Diagnosis and Treatment

Advocates, Medical Professionals, Patient & Caregiver, Patient Organizations, RDCA-DAP, Research & Drug Development, Understanding Rare Disease, Educational Video, Education, Policy,

What is Patient Focused Drug Development (PFDD)?