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Links to sites with material related to the Nager & Miller Syndromes People interested in submitting blood samples for Nager and Miller Syndromes mapping research should contact: Dr. Ethylin Wang Jabs at phone number 410 955-4160 or e-mail ewjabs@jhmi.edu For informations on Genetic Research for Nager And Miller Syndromes Mapping the genes for Miller Syndrome, and Nager Syndrome and other Acrofacial Dysostoses: Eric A. Wulfsberg, MD Assistant Professor of Pediatrics University of Maryland Division of Human Genetics University of Maryland School of Medicine 22 S. Greene Street, A661 Baltimore, Maryland 20201-1595 Phone: (410) 328-3335 Fax : (410) 328-3379 e-mail: ewulfsberg@peds.umaryland.edu National Library of Medicine http://www.nlm.nih.gov Familyvillage http://www.familyvillage.wisc.edu/lib_nms.htm NORD The National Organization for Rare Disorders,Inc. Faces http://www.faces-cranio.org American Cleft Palate-Craniofacial Association (ACPA) http://www.cleftline.org Alliance of Genetic Support Groups http://www.geneticalliance.org National Parent Network on Disabilities http://www.npnd.org National Council on Disability http://www.ncd.gov Individuals with Disabilities Education Act http://www.ed.gov/offices/OSERS/IDEA The National Patient Travel Center http://www.patienttravel.org/ (If a patient must travel long-distance for specialized medical evaluation, diagnosis or treatment) Let's Face It http://www.faceit.org About Face http://www.aboutfaceinternational.org Children's Craniofacial Association http://www.ccakids.com National Information Center on Children and Youth with Disabilities, http://www.nichcy.org http://activeteen.disabilitycentral.com Funded by the U.S Department of education, @ctive Teen is an educational, social and informative resource for teens with disabilities, their families, their friends and their able - bodied peers. The site is managed by teenagers with disabilities from across the U.S. Social Security Administration Benefits For Children With Disabilities Internet Website: http://www.ssa.gov Toll-Free Number 1-800-772-1213 TTY Number 1-800-325-0778 http://heartfeltpress.net There you find information about our 4 memory books for families with children with special needs. The books cover the first year, the toddler years and the school years. They are designed to highlight the unique development of children with challenges, and to capture each precious milestone in their lives. Smile Train - For free surgeries for children around the world: http://www.smiletrain.org State Human Services Administrators - for info re: financial assistance by state: http://www.acf.hhs.gov/programs/ofa/hs_dir2.htm http://www.aboutfaceusa.org http://www.cleftadvocate.org This site offers special health care products that can help make life a little easier. http://www.arthritissupplies.com
David Roche, Professional Speaker, Performer, Humorist and friend to FNMS. http://www.hhs.gov/ohrp Office for Human Research Protections (OHRP)of the Dept. of Health and Human Services http://www.nchpeg.org National Coalition of Health Professional Education in Genetics(NCHPEG)