See a list of organizations that serve a broad range of disabilities
U. R. Our Hope
U. R. Our Hope provides education, emotional support, advocacy and financial assistance for individuals and families of children with rare diagnosis or are undiagnosed..
Rare and Undiagnosed Network
To empower rare and undiagnosed patients and their families with genomic information and community through advocacy, networking and support.
Syndromes Without A Name (SWAN)
Support for Children with Undiagnosed Conditions or Syndromes Without A Name
Cheyanna’s Champions 4 Children
CC4C provides children with rare or undiagnosed conditions and their families in the Central Texas area with resources to help meet the child’s medical needs not covered by insurance or other financial assistance. They also offer support and other services.
SWAN USA (Syndromes Without A Name) Facebook Group
This is a group for families with children who remain undiagnosed.
Parent Group: National Parent Group: Online Only
Rare Connect.Org provides online connections, education, support and information on rare and undiagnosed brain diseases
Global Genes Project
Global Genes is a rare disease advocacy organization.
Abigail E. Keller Foundation
This foundation offers financial support to programs and organizations that serve the rare, undiagnosed, terminally ill, and medically complex/fragile pediatric community.
Parent Group: Local
Global Genes is a rare disease advocacy organization with global reach to the worldwide rare community of patients, caregivers, advocates and clinical partners.