EDSers United



Useful Resources for Rare Disease Patients


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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 

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

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