EDSers United

                   

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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


Copyright 2010-2017. EDSers United. All Rights Reserved.

Resource Directory


We want to list your organization if you have resources/information to offer our community! Contact Us for more information on how to get your organization listed.


  • New Jersey Department of Human Services - The Division of Disability Services is a great resource for disabled NJ residents. Click Here to view the Resources 2013 Directory. This publication is a great resource for people with disabilities, their support systems, and advocates because of its comprehensive, statewide directory of programs and services.
  • Invisible Disabilities Association (IDA) - IDA has great information for people living with invisible conditions. They shine light on all of the Zebra's of the World.
  • Social Security Disability Benefits - EDSers (any type) should apply for disability benefits if you 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 is why you are declaring disability), with 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 their 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.
  • The Unbroken Smile - Where Chronic Pain Conditions Unite Worldwide

RareConnect.org is a wonderful product of a partnership between EURORDIS & NORD. RareConnect.org connects rare disease patients from around the world.