Resource Directory

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• Social Security Disability Benefits - EDSers (any type) should apply for disability benefits if they are no longer capable of working full-time or at all. due to the severity of your medical condition. The process is very time-consuming and can be very agitating. However, Social Security Disability Benefits can help low-income EDSers with numerous inevitable medical bills. After 2 years of being declared disabled by social security, you will be eligible for Medicare. In order to help become approved for disability you will need to send in a packet of documents explaining what EDS is (if complications from EDS are why you are declaring disability), with the highlighted text of what symptoms you suffer from specifically. Then you will need supporting documents from your physician confirming that you are diagnosed with EDS and that you are suffering from the symptoms that you highlighted in the documents printed from the medical database(s). 
• Drivers with Disabilities - Are you wondering how to obtain a handicap hangtag or handicap plates? Every state has its own application and requirements. Information for drivers with disabilities is available via the DMV Guide at DMV.org. 
  
• Tax Tips for the Legally Disabled - Several tax breaks are available for people living with disabilities. These tax breaks aren't always obvious, though. You have to know where to look for them.

Useful Materials

• Organized Medical Info - use this document to organize your personal medical information. Use as the first document in your medical binder.
  
• Chronic Pain Notebook - use this document to help you effectively communicate your pain levels, intensities, frequencies, etc. to your doctor.
  
• Record Your Doctor Visit - download this page and bring it along to your next doctor visit
  
• Your Personal Medicine Tracker - start tracking your medications now by downloading and printing this worksheet. Print one for each week and keep a log of your prescriptions. A log provides a visual reminder to take your meds and helps to avoid dangerous drug mix-ups and accidental overdoses.
  
• Medical History - utilize this document to organize your own medical binder

• Rare Advocacy Movement​
  
• ​Invisible Disabilities Association (IDA)
• Rare Disorders Denmark
• Madisons Foundation
• Genetic and Rare Diseases (GARD) Information Center - NIH
• Undiagnosed Diseases Network (UDN) - NIH