Resources

Rare Disease Diagnosis and Education:

• Genetic and Rare Diseases (GARD) Information Center
• National Center for Advancing Translational Sciences: Rare Diseases Research and Resources
• U.S. Food & Drug Administration (FDA)
• National Center for Advancing Translational Sciences: Rare Diseases Registry Program (RaDaR)
• National Organization for Rare Disorders (NORD): IAMRARE Registry Program
• NYMAC Regional Genetics Network: Resources for Genetics in Virginia
• VCU Health: Genetic and Community Resources

Rare Disease Organizations:

• National Organization for Rare Disorders (NORD)
• EveryLife Foundation for Rare Diseases
• Rare Disease Foundation
• Rare Diseases International
• Cambridge Rare Disease Network
• The Rare Disease Diversity Coalition (RDDC)
• Rare Connect
• Global Genes: Allies in Rare Disease
• Genetic Alliance
• Rare Disease Day
• Eurordis: Rare Diseases Europe

Rare Disease Treatments, Research, Clinical Trials and Studies:

• National Library of Medicine
• Boston Children’s Hospital: Rare Disease Cohorts
• UPMC Children’s Hospital of Pittsburgh: Center for Rare Disease Therapy
• Children’s National Hospital: Rare Disease Institute
• UCLA California Center for Rare Diseases
• National Organization for Rare Disorders (NORD): Current Clinical Trials and Studies
• Rare Diseases Clinical Research Network
• Undiagnosed Diseases Network
• National Center for Advancing Translational Sciences: Therapeutics for Rare and Neglected Diseases
• University of Florida Powell Center for Rare Disease Research and Therapy
• Cure Rare Disease
• International Rare Diseases Research Consortium (IRDiRC)
• Rare Diseases Clinical Research Network: Rare Diseases Research Groups & Studies
• Calvin University: Rare Disease Research and Support

Caregiver and Patient Resources:

• Angel Aid
• National Organization for Rare Disorders (NORD): Living with a Rare Disease
• National Alliance for Caregiving: Rare Disease Caregiving
• Give an Hour: Rare Caregivers
• Global Genes: Mental Health and Self Care Resources for Rare Patients and Caregivers
• Courageous Parents Network
• Make-A-Wish Foundation: Greater Virginia

Virginia Resources:

• Virginia Department of Health
• Virginia Department of Medical Assistance Services
• Virginia Department of Education
• Virginia Department of Behavioral Health and Developmental Services
• Virginia Commonwealth University: Partnership for People with Disabilities

Virginia Department of Health Resources:

• Bleeding Disorders Program
• Care Connection for Children (CCC)
• Child Development Services
• Metabolic Formula and Food Program
• Newborn Screening Programs
• Sickle Cell Awareness Program

Education and Information:

Rare Disease Council Educational Handout