Rare Disease Resources
The Genetics team at Children's Mercy has collected a range of resources to help families find extended support within the community. These resources provide useful information about community assistance, experiences, patient and family support, and opportunities to participate in research and clinical trials.
1-800-Children: Resource provided by Kansas Children's League to connect with services and support in Kansas.
Beacon Program Resources: Extensive list of resources including education/employment supports, community programs, health care resources, and financial assistance.
Children's Mercy Patient Family Advisory Counsil (PFAC): Children's Mercy PFAC brings together parents, guardians, and staff members to enhance communication and provide input on policy and procedures for children and families experiencing rare disease.
Genetic Education Materials for School Success (GEMSS): Condition specific information and resources for schools, professionals, and other audiences.
Rare Disease InfoHub: An information portal for information and resources for patients and families with rare disease.
Ultimate Resource Guide: 300+ page resource with general, local, and state-based resources for patients/families with rare disease.
Being Positioned: Nonprofit creating unforgettable travel experiences for adult individuals affected by life-altering genetic disorders.
Hope Kids: Provides events, activities, and support to patients/families with life-threatening medical conditions.
Make a Wish: Organization provides wishes to children with critical illnesses.
Dream Factory: Grants dreams for children with critical or chronic illnesses.
Parents Offering Parent Support (POPS) Program: Trained parent volunteers mentoring other parents through their child's health condition.
Global Genes: Provide support, resources, and connections to patients and families with rare disease.
MyGene2: A family driven portal where families can choose to publically share information to connect with other families, clinicians, and researchers.
National Organization for Rare Diseases: Non-profit organization dedicated to the care, research, policy, and community for all rare disease. Includes rare disease database, registry to promote research, and patient assistance programs.
RareConnect: International online communities and discussion groups for specific diseases.
RareKC: A local support group for families of all rare disease to connect with each other and researchers.
Unique Rare Chromosomes: Information Guides on chromosome and (some) gene disorders.
Courageous Parents Network: Non-profit organization with resources and tools to empower families and caregivers caring for someone with serious medical conditions.
Rare Genomes Project: Patient driven research study for patients with an unknown/undiagnosed condition.
Syndromes Without a Name: Support, information, and advice for patients/families living with an undiagnosed condition.
Undiagnosed Disease Network: Clinical and research testing for patients without a diagnosis after workup.
Wilhelm Foundation: Advocacy, support, and research organization for individuals with undiagnosed diseases.
ASGCT Clinical trials finder: Search program through American Society of Gene + Cell Therapy for clinical trials.
Center Watch: Discover clinical trials.
Clinical trials: Database of clinical trials.
GenomeConnect: NIH program registry aiming to share genetic and health information with researchers.
Rare Disease Registry at Sanford: An international patient registry for rare disease. There may be additional registries for your child's specific diagnosis.
Rare-X: Global Genes research program providing a platform for data sharing and analysis of rare disease.
Research Match: NIH program connecting interested participants with researchers.
Simon's Search Light: An international research program aiming to connect families and researchers of genetic neurodevelopmental disorders.
EveryLife Foundation: Advocacy group for rare-disease focused legislation and policy.
Global Genes: Global Advocacy Alliance is a group of organizations working to build awareness, develop research and treatments, create support networks, and meet the needs of the rare disease community.
National Organization for Rare Diseases: Non-profit organization dedicated to the care, research, policy, and community for all rare disease.