🏛️ Nebraska Advocacy & Policy
The following resources are provided through the Nebraska Department of Health and Human Services (DHHS) and are particularly relevant to rare disease families navigating disability services and Medicaid programs.
🏥 Nebraska Healthcare Resources
Boys Town Neurogenetics
Comprehensive neurogenetics and rare disease clinic providing specialized care for children with genetic conditions.
Visit Website →UNMC Genetics
University of Nebraska Medical Center offers genetic testing, counseling, and specialized care for rare diseases.
Visit Website →
Children's Nebraska
Children's Nebraska, based in Omaha, Neb., is a 279-bed nonprofit organization caring for children since 1948. Children's is the only full-service pediatric specialty health center in Nebraska providing care in more than 50 pediatric specialties, as well as primary care. Patients are referred from throughout the five-state region and beyond for the treatment of complex childhood diseases. At Children's, no child in need of medical care is ever turned away due to inability to pay.
Visit Website →🤝 Partner Organizations
The Arc Nebraska
Advocacy organization supporting people with intellectual and developmental disabilities and their families.
Visit Website →Munroe-Meyer Institute (MMI)
Research and clinical services for developmental disabilities, including autism and genetic conditions.
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PTI Nebraska
Parent Training and Information center providing support and resources for families of children with disabilities.
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NCDD (Nebraska Council on Developmental Disabilities)
Developmental Disabilities Council advocating for policy and systems change in Nebraska.
Visit Website →🌎 National Rare Disease Resources
NORD (National Organization for Rare Disorders)
Leading advocacy organization providing resources, support, and information for the rare disease community.
Visit Website →Genetic and Rare Diseases (GARD)
NIH information center providing reliable information about genetic and rare diseases.
Visit Website →EveryLife Foundation
National advocacy organization working to improve healthcare policy for rare disease patients.
Visit Website →Hunter's Hope Foundation
Reducing stressors for families affected by Duchenne Muscular Dystrophy and DEGS1 Leukodystrophy by eliminating barriers to accessible resources, funding research, and improving community understanding.
Visit Website →Parent Project Muscular Dystrophy
Leading organization fighting Duchenne and Becker muscular dystrophy through research, advocacy, and support for affected families.
Visit Website →🤲 Caregiver Support
Caregiver Action Network
National family caregiver organization offering a free Caregiver Help Desk, peer support, and educational resources for anyone caring for a loved one with a chronic or rare condition.
Visit Website →Elizabeth Dole Foundation
Supports military and veteran caregivers through its Hidden Heroes campaign, connecting families with vetted resources, peer community, and financial assistance.
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We Are Brave Together
International nonprofit community for mothers caring for a child or adult child with a disability, rare diagnosis, or complex medical needs, offering support groups, retreats, and mentoring.
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Raregivers.global
Global community celebrating and supporting caregivers of those with rare, chronic, and complex conditions through recognition programs and caregiver-centered resources.
Visit Website →💰 Financial & Travel Support
CHAD (Children's Hospital Aid and Diagnosis)
Provides travel assistance for families traveling to medical appointments in Nebraska.
Contact Us for Info →PAN Foundation
Patient assistance for copays and out-of-pocket medication costs for chronic and rare diseases.
Visit Website →Ronald McDonald House
Housing for families with children receiving medical treatment away from home.
Visit Website →Need Help Finding Resources?
We're here to help connect you with the support and information you need. Reach out anytime.
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