Ehlers-Danlos National Foundation Conference to Help EDS Patients Manage Symptoms and Access Support
McLean, VA (PRWEB) March 05, 2014 -- The Ehlers-Danlos National Foundation (EDNF) is pleased to announce that registration for the world’s largest gathering of people with Ehlers-Danlos syndrome (EDS), family caregivers, and experts, the EDNF 2014 Learning Conference, opened today. At EDNF’s conference, to be held July 10-12, 2014 in Houston, Texas at the Hilton Americas Hotel, EDS patients will connect with knowledgeable professionals in the medical community and other EDS patients. Attendees will be able to access a support network and learn strategies to manage symptoms so that they can better live with this debilitating connective tissue disorder.
“This year’s conference is an opportunity for attendees to learn more about EDS in one weekend than they could by spending months researching the disorder through other avenues,” said Sandy Chack, EDNF Board Chair. As we exchange ideas and gain valuable knowledge, we will also learn from each other’s experiences and enjoy each other’s company. We will celebrate each other, that in spite of the daily challenges, the pain, and the emotional struggles, we are part of a community. We hope every attendee will return home with important new information and with newfound friendships and connections.”
More than twenty speakers, including top physicians in their fields, will present sessions on coping and managing some of the difficult issues EDS patients face. They will lead discussion groups for the newly diagnosed, parents, caregivers, and those who suffer from vascular type EDS. Special activities will be organized for children and teenagers in attendance. Other features of the conference include physicians consultations where attendees can meet with an EDS specialist and a silent auction to raise money for EDS research.
For more information about the EDNF 2014 Learning Conference and to register, please visit: http://ednf.org/conference.
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About Ehlers-Danlos National Foundation (EDNF): EDNF is the leading authority for Ehlers-Danlos Syndrome (EDS), a group of genetic connective tissue disorders. To support research and education about EDS to prevent disfigurement, crippling, and premature death through early and accurate diagnosis, EDNF increases awareness about EDS by fostering and funding research, generating and distributing accurate and responsible information, and delivering recommendations for those seeking diagnosis of problems that have been a life-long mystery. EDNF also provides support to those who have been diagnosed with EDS by offering information and emotional validation for the newly diagnosed wrestling with what a genetic disorder means for them and their families, and provides tips for those who have lived with EDS for years, including day-to-day inspiration and news. EDNF’s members are physicians and other medical practitioners, researchers, people with EDS, and friends. For more information, visit http://www.ednf.org.
Diana Cummins, Ehlers-Danlos National Foundation, http://www.ednf.org, +1 (703) 506-2892, [email protected]
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