Ehlers-Danlos syndrome

Support Type
Support Services
  • EDSers United

    Mission is to develop the Treatment and Research Center for Rare Genetic Conditions. This center will specialize in Ehlers-Danlos Syndrome and will adopt other rare diseases as it grows and advances throughout the years. EDSers United was initially launched in 2010 to generate global awareness and to provide overall support to those affected by Ehlers-Danlos Syndrome. We have always focused on steps to one day be a part of finding a cure for all the types of EDS that currently exist. We are a team of EDSers, Caregivers & Health Care Providers dedicated to establishing a center of excellence.

    Disease Support Organization Last Updated: 30 Jan 2019
  • EDS Today

    Is to provide Ehlers-Danlos information, awareness, education, guidance and support for all those affected. Also for their families, the general public and those in the medical community.

    We strive to bring recognition, identification and a correct diagnosis for ALL those affected. They are guided towards knowledgeable (skilled) medical professionals, appropriate treatments, preventive management, interventions and monitoring.

    We advocate, support, assistance with medical crisis, networking and navigating the medical system. We help to foster funds for vital EDS research projects that could help improve the future and quality of life for the EDS patient.

    We are committed to this mission!

    Disease Support Organization Last Updated: 30 Jan 2019
  • Ehlers-Danlos National Foundation

    Ehlers-Danlos National Foundation creates resources for those affected by the connective tissue disorder Ehlers-Danlos Syndrome.

    Disease Support Organization Last Updated: 30 Jan 2019
  • Chiari & Syringomyelia Foundation

    Our mission is to advance knowledge through research and to educate the medical, allied sciences, and lay community about Chiari malformation, syringomyelia and related CSF (cerebrospinal fluid) disorders.

    Disease Support Organization Last Updated: 30 Jan 2019
  • Oklahoma Family Network

    To Provide emotional, informational and navigational support to those who have special health care needs or a disability, their families and the professionals who serve them. OFN promotes family/professional partnerships and family-centered care, assuring services are offered as recipients prefer..

    Disease Support Organization Last Updated: 30 Jan 2019

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