Ehlers-Danlos Society Disease Support Organization Last Updated: Jul 5, 2019 03:03:37 pm Brochure Established: 1985 Area Served: United States Ehlers-Danlos Society (formerly Ehlers-Danlos National Foundation) creates resources for those affected by the connective tissue disorder Ehlers-Danlos Syndrome. Website: https://www.ehlers-danlos.com Diseases Supported Ehlers-Danlos syndrome • Ehlers-Danlos syndrome hypermobility type • Ehlers-Danlos syndrome progeroid type • Ehlers-Danlos syndrome type 5 • Ehlers-Danlos syndrome vascular type • Ehlers-Danlos-like syndrome due to tenascin-X deficiency Show All 6Show Less 1760 Old Meadow Road Suite 500 McLean, Virginia 22102 United States 703-506-2892 firstname.lastname@example.org This organization has not provided any social media links. Staff Speaks: English Telephone Translation: No (Translation services available for other languages) Our Organization Incorporated Nonprofit National Organization 501(c)3 Non-Profit Professional/Medical Board Board of Directors Paid Staff Our Financials This organization has not provided Financial details. N/A Funding for Services N/A Annual Budget N/A Funding for Research Our Membership 856 Membership Size N/A # of Chapters 17,000 Total Number on Mailing List 10,000 People with Conditions in Your Mailing List What We Do Support & Peer Matching Referrals to Matching Individuals/Families Peer Support Peer-to-peer Counseling Referrals to Local Chapter or Group Patient Navigators Translation Services Therapy & Counseling Professional Counseling Crisis Intervention Grief Counseling Medical Referrals Medical Care Clinical or Treatment Centers Rehabilitation Services Respite Care Genetic Testing Genetic Counseling Legal Advice Workplace Issues Malpractice Help with Adoption or Placement Financial Assistance Medical Care Transportation Assistive devices Insurance Scholarships Home Modifications Research Referrals to Research Studies Registry of affected individuals Blood and Tissue Sample Storage Education & Training Telephone Helpline E-mail List Training Speakers Bureau Advocacy Training Other Pen pal Program Summer Camp This entry will be permanently deleted. Are you sure you want to continue? Are you sure you want to change the status of this editor?