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

Advocates, Medical Professionals, Patient & Caregiver, Patient Organizations, Pediatric, Students & Volunteers, Understanding Rare Disease, PDF, Education,

October 17, 2022

2020 Rare Diseases Report: Rheumatology

Advocates, Patient & Caregiver, Patient Organizations, Pediatric, Researchers, Students & Volunteers, Genetic Testing, Research & Drug Development, Understanding Rare Disease, Educational Video, Policy,

September 28, 2022

Screen Baby Screen: Perspectives on Newborn Screening

Patient & Caregiver, Patient Organizations, Pediatric, Understanding Rare Disease, Educational Video, Education,

Pediatric Movement Disorders: Guidance for Parents and Physicians

Patient & Caregiver, Pediatric, Understanding Rare Disease, Educational Video, Education, Membership,

Transitioning to Adult Care

Patient & Caregiver, Pediatric, Understanding Rare Disease, Educational Video, Education,

The Rare Sibling Experience