Rare Disease Resource Library

Advocates, Medical Professionals, Pediatric, Physician, Researchers, Advocacy, Research & Drug Development, Publication, Medical Affairs, Research,

December 13, 2024

How To Advocate For Rare Disease-Related Policies: A Guide for Professionals Involved in Diagnosis, Care, or Research of Rare Diseases

Medical Professionals, Patients & Caregivers, Genetic Testing, Educational Video, Education,

October 16, 2024

¿Por qué debería hacerme una prueba genética si ya tengo un diagnóstico?

Medical Professionals, Patient & Caregiver, Genetic Testing, Educational Video,

November 3, 2023

Pruebas Genéticas Para Enfermedades Poco Comunes Y No Diagnosticadas

Medical Professionals, Patient & Caregiver, Genetic Testing, Educational Video, Education,

Genetic Testing for Rare and Undiagnosed Diseases

Medical Professionals, Patient & Caregiver, Genetic Testing, Infographic, Education,

November 2, 2023

¿Qué son las Pruebas Genéticas?

Medical Professionals, Patient & Caregiver, Genetic Testing, Infographic, Education,

Genetic Testing for Rare Diseases

Advocates, Medical Professionals, Researchers, Students & Volunteers, Rare Disease Advisory Councils (RDAC), Webinar, Policy,

February 7, 2023

RDAC Stakeholders Meeting – 2022

Advocates, Medical Professionals, Patient & Caregiver, Patient Organizations, Researchers, Gene Therapy, Collection, Educational Video,

November 3, 2022

Genome Editing 4 – The approval process

Advocates, Medical Professionals, Patient & Caregiver, Patient Organizations, Researchers, Gene Therapy, Collection, Educational Video,

Genome Editing 3 – How do I participate and what is the role of patient organizations?

Advocates, Medical Professionals, Patient & Caregiver, Patient Organizations, Researchers, Gene Therapy, Collection, Educational Video,

Genome Editing 2 – What are the safety, ethical and cost concerns