Rare Disease Patient Group

Rare Diseases are Not Rare – A Training on Rare Disease Resources

Network of the National Library of Medicine [NNLM]

Natural History Studies for Rare Diseases

U.S. Food and Drug Administration

Connecting Rare Disease Patient Communities and Advocacy Groups

How To Manage A Small Rare Disease Patient Group - Introduction

How Rare Disease Patient Groups Can Work With Researchers - Introduction

How Rare Disease Patient Groups Can Work With Pharma - Speaker 1

Crowdfunding for Rare Disease Patient Groups - Speaker 1

UCLA California Center for Rare Diseases Patient Stories 2021

David Geffen School of Medicine at UCLA

Precision Medicine in the Era of Rare, 2024

10 Tips for Newly Diagnosed Rare Disease Patients and Families

National Organization for Rare Disorders (NORD)

Medical Pioneer: First Patient Receives Unique Rare Disease Therapy Developed at UC San Diego

UC San Diego Health

How Rare Disease Patient Groups Can Work With Researchers - Speaker 1

The Importance of Advocacy Groups for Rare Disease Patients

How Rare Disease Patient Groups Can Work With Researchers - Speaker 4

Patients Matter: How Rare Disease Patients Can Move Scientific Discovery Forward

U.S. Food and Drug Administration

How Rare Disease Patient Groups Can Work With Researchers - Speaker 3

Fundraising for rare disease patient groups - Rick Thompson

Crowdfunding for Rare Disease Patient Groups - Speaker 2

How To Manage A Small Rare Disease Patient Group - Speaker 1

Walk In Our Shoes: The Experience of Rare Disease Patients

National Organization for Rare Disorders (NORD)