Useful Resources for Rare Disease Patients​

• Rare Advocacy Movement

Funding Opportunities &

Assistance Programs for

Disabled Children

• United Health Care Foundation
  
• Aubrey Rose Foundation
• Division of Specialized Care for Children
• Midwest Special Needs Trust Grants - for residents of Missouri only
• Kiddie Pool - funding support from adaptive mall​​
• Travis Roy Foundation
• The Lexi Kazian Foundation 
• The Humanitarian Foundation - Dental Coverage
• Social Security Disability & Medicaid 
  
• Bridges for Kids
  
• ​Wright's Law Yellow Pages for Kids   
  

Transportation/Vehicle

Resources

• Adaptive Mobility Systems (AMS) Vans
• Adapting Motor Vehicles for Disabilities
• Handicaps, Inc.
• Friends of Disabled Adults & Children
• Special Kids Fund
• Disabled Dealer
• Mobility Works - Handicapped Driver Services
• Roll-A-Ramp
• Air Charity Network - Flights
• A Guide to Car Accessibility and Modifications for Drivers With Disabilities
  

Healthcare

Insurance Resources

• Health Care Financing - Family Voices
• Unite for Sight ​ 
  
• ​Applying for Disability Benefits Online​

Publications

• Exceptional Parent Magazine
• Able: The Newspaper Positively For, By & About the Disabled - Able is a great news source for everything pertaining to disabilities. The paper features a calendar of events, columns written by various experts and a variety of informative articles.

Caregiver & Care Partner Resources

• Disabilities-R-Us
• Today's Caregiver
• Empowering Caregivers
• National Alliance for Caregiving
• Kids Together
• Well Spouse Association
• Family Caregiver Alliance
• United Hospital Funds Next Steps in Care
• Caregiver Action Network
• Local UK Carers Services
• Australian Commonwealth Respite and Carelink Centres
• Carers New Zealand

Service Animals

• New Horizons Service Dogs

Assistance Programs

• Mayfield Chiari Center - Free Consultation.                                                                               If you suspect Chiari based on symptoms and signs, order a brain-cervical MRI plus cine-flow MRI (CPT 76125). Submit a completed pre-screening questionnaire and copies of the radiology reports to chiari@mayfieldchiaricenter.com or fax 513-475-8664. A neuroradiologist and neurosurgeon will review your case at no cost and will provide you with a prompt response regarding your case within 72 hours of receiving your form and reports. Click Here to view an informative video highlighting Chiari Malformation and it's overlap with Ehlers-Danlos Syndrome.
• HRSA - for those with no medical insurance, you can find a federally funded health care center​​​
• ​Government Benefits - find out which government benefits you may be eligible to receive
• College Scholarships and Financial Aid for Students with Disabilities
• Resources for Students with Disabilities 

Wheelchair Resources

• Wheels for the World
• Wheelchair Foundation

Clinical Trials

View and be able to search for the most current clinical trials being conducted. See if you can join a study that is still recruiting.

Parental Emotional

Support Articles

• Raising a Child with Disabilities
• Raising a Child with a Disability
• Raising Children Network
• Personal costs of caring for a child with a disability: A review of the literature
• Parenting with chronic pain
• You are not alone - for parents when they learn that their child has a disability
• You're not alone - from the National Information Center for Children & Youth with Disabilities