What Is an EDS/HSD Nonprofit Organization or Charity?

National Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) charities/nonprofit organizations are important for increasing EDS and HSD awareness in medical communities, government departments, and the general population in a country. They also work daily to improve medical care for those with these conditions by educating patients and doctors about EDS and HSD, treatment options, and common comorbid conditions.

National EDS and HSD charities/nonprofit organizations work in a variety of ways to meet their mission goals. Examples are:

  • Hosting national EDS and HSD conferences for patients and doctors,
  • Funding EDS and HSD research,
  • Helping to fund EDS and HSD clinical care and research centers,
  • Providing message boards for all with EDS and HSD in a country,
  • Producing articles and brochures about EDS and HSD that are reviewed by a medical panel,
  • Advocating for the EDS and HSD community at national government hearings and other events,
  • Running a Helpline for patients and doctors.

National EDS and HSD charities/nonprofit organizations and local EDS and HSD support groups both help support those with these conditions and may do similar tasks; however, there are differences too. National charities/nonprofit organizations need to raise lots of funds and donations to do all they can to improve the care those with EDS and HSD get in their country. National charities/nonprofit organizations work daily to improve the care those with EDS and HSD receive whereas Local EDS and HSD support groups tend to meet periodically but do not require multiple tasks completed each day. National charities/nonprofit organizations work to advance the priorities of those with EDS and HSD who live in a country while local support groups advance the priorities of those with EDS and HSD in a local community or state. Here are more ways national EDS and HSD nonprofit organizations/charities and local EDS and HSD support groups are similar and different:

National EDS Organizations/ CharitiesLocal EDS Support Groups
Hold EDS conferencesHold local meetings and/or social get-togethers
Contribute to/partner with EDS research projectsFundraise for EDS research
Host conferences or webinars for doctorsSpeak to local hospitals or medical schools
Fund EDS Clinical Care and Research Centers 
Host a message board/forum for those with EDS and doctors in the countryHave a Facebook group or message board for those with EDS in the city or state
Have representatives at national/federal government hearings about issues important to those with EDSHave awareness events at the state capital and other locations
Run a Helpline (emails and/or calls) staffed by EDS-knowledgeable people for those with EDS and doctors to contact with questionsMaintain a doctors list of medical practitioners those who have EDS in the city or state recommend
Provide a website with extensive EDS-doctor approved articles, brochures, and other resourcesMay have a website with basic information about EDS and the support group
Must fundraise, write grant applications, and seek donations to fund the efforts of the charity or nonprofit organizationCan run with no funds by meeting in free locations and communicating on free platforms
Must be registered with the government following the laws of the country for charities and nonprofit organizationsDo not need to be registered with the government. Usually, a support group does not need to be registered as a nonprofit/charity if the group does not hold onto money. If fundraising, sending the funds immediately means the support group does not hold onto money.

 
The Ehlers-Danlos Society started in 1985 by one woman: https://www.ehlers-danlos.com/our-history/. Please consider starting an EDS and HSD charity/nonprofit organization in a country that does not have one. To start an EDS and HSD charity or nonprofit organization, please learn about the laws in your country about how to do so. To start a support group, please see our page Starting and Running an EDS and HSD Support Group.