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EDSers United

Support Research by registering today as an EDSer! 

Foundation

Would you like to contribute to finding the cure?


If you would like to do your part in finding the cure for Ehlers-Danlos Syndrome and other related conditions register today as an EDSer with the EDSers United Foundation (EUF) Patient Registry. In order to qualify, you must of been diagnosed with Ehlers-Danlos Syndrome or a related condition by a licensed health care practitioner. Undiagnosed individuals suspected of being born with EDS or a related condition are also eligible for enrollment, however we request that you notify us as soon as you receive an official diagnosis so that we may be able to properly classify you and provide more accurate statistical data for the research.


The registry holds basic contact and diagnostic information on those who agree to enroll. Any researcher with the appropriate approval can then request basic statistical information generated by the registry that might be helpful to the research they are conducting. 


By enrolling in the EUF Patient Registry, participants will also have the option of choosing to be notified of any opportunities to participate in clinical trials and other research opportunities. 


Clinical Trials


View the most current clinical trials being conducted with a concentration on Ehlers-Danlos Syndrome. 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 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.
  • Forest Pharmaceuticals, Inc. Patient Assistance Program - this program provides certain Forest products to patients who are unable to afford the cost of their medication and who meet other eligibility requirements. Eligibility for this program is based upon information you and your licensed practitioner provide on the application form. If you are approved, you will receive a three-month supply of the Forest product you require at no charge. Forest will ship your medication to your licensed practitioner's office for them to dispense to you.
  • 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