EDSers United


Useful Resources for Rare Disease Patients

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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.

Assistance Programs

"Many are living below the poverty line due to a combination of not being able to work & of having to spend any money they do have on medications and other treatments that health insurance doesn't cover, if they're lucky enough to even have health insurance. Tragically, poverty, chronic pain, and chronic illness too often go hand in hand." - Tony Bernhard, J.D. in Turning Straw into Gold

  • 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 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.
  • Rx 4 NJ - a no cost service connecting qualified New Jersey residents to discounted - or even free - prescription medications. 
  • HRSA - for those with no medical insurance, you can find a federally funded health care center
  • Free Tens Unit - Download the application in order to obtain your free Tens Unit via Medical Products Online, Inc. Simply print the application and have your doctor/physician fill out the form. Fax it, mail it, or scan and email to the given address available at the top of the application. 
  • Patient Advocate Foundation - provides patients with financially focused tools to sort resourced for a broad range of needs including housing, utilities, food, transportation to medical treatment, home health care, medical devices, and pharmaceutical agents.
  • Government Benefits - find out which government benefits you may be eligible to receive

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