A-Z to Deafblindness: Understand more about deafblindness, and the people who live with it, including information about how to communicate with a deafblind person Amyloidosis Support Network: Provide complete, integrated, easy-to-reach support and information to existing information and referrals for other sources of help. Primarily for patients and their families struggling with the disease Bandaides and Blackboards: Supports kids, teenagers and adults who are dealing with having a medical problem. Advice about teasing, what to expect in a hospital, poetry, and shared stories CancerGuide: Provides an orientation to help motivated patients begin to actively engage their disease and their health care team Ehlers-Danlos National Foundation: American nation-wide support and information to those affected by EDS. Includes many articles, message boards, chat room, information for medical professionals, and regional support groups GeneTests: Medical genetics knowledge base. NIH funded, expert-authored descriptions of inherited disorders. Covers genetic testing in diagnosis and management and genetic counseling of patients International Trachoma Initiative (ITI): Includes information on trachoma, prevention, treatment, initiative and programs. Founded by Pfizer Inc and The Edna McConnell Clark Foundation Lymphatic Education and Research Network: A non-profit corporation whose mission is to help identify, support and promote research into the causes, treatments, and potential cures for lymphedema and other angiodysplasia disorders National Cancer Institute: Credible, current cancer information from the U.S. National Cancer Institute National Organization for Rare Disorders, Inc.: Information about NORD, its programs, special events and the variety of services offered. Includes a rare disease, organization and orphan drug database. Diseases are listed alphabetically for easy searching NINDS Stroke Information Guide: Stroke prevention, recognizing stroke, acute treatment, and recent stroke trials PKS Kids: Includes biographies and photos of children with the syndrome, first-hand information from parents, and links to related support and equipment resources Scleroderma Support Groups: Worldwide listings and online support resources The Vestibular Disorders Association (VEDA): VEDA is a nonprofit organization that exists to provide information and support to people suffering from inner-ear balance disorders |
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