{"id":103,"date":"2023-03-14T17:33:19","date_gmt":"2023-03-14T21:33:19","guid":{"rendered":"https:\/\/www.vdh.virginia.gov\/rare-disease-council\/?page_id=103"},"modified":"2025-07-24T09:10:46","modified_gmt":"2025-07-24T13:10:46","slug":"resources","status":"publish","type":"page","link":"https:\/\/www.vdh.virginia.gov\/rare-disease-council\/resources\/","title":{"rendered":"Resources"},"content":{"rendered":"<div id=\"pl-103\"  class=\"panel-layout\" ><div id=\"pg-103-0\"  class=\"panel-grid panel-no-style\" ><div id=\"pgc-103-0-0\"  class=\"panel-grid-cell\" ><div id=\"panel-103-0-0-0\" class=\"so-panel widget widget_sow-editor panel-first-child panel-last-child\" data-index=\"0\" ><div\n\t\t\t\n\t\t\tclass=\"so-widget-sow-editor so-widget-sow-editor-base\"\n\t\t\t\n\t\t>\n<div class=\"siteorigin-widget-tinymce textwidget\">\n\t<h3 style=\"margin-bottom: 5px;\">Rare Disease Diagnosis and Education:<\/h3>\n<ul>\n<li><a href=\"https:\/\/rarediseases.info.nih.gov\/\">Genetic and Rare Diseases (GARD) Information Center<\/a><\/li>\n<li><a href=\"https:\/\/ncats.nih.gov\/rare-diseases\">National Center for Advancing Translational Sciences:<\/a> Rare Diseases Research and Resources<\/li>\n<li><a href=\"https:\/\/www.fda.gov\/patients\/rare-diseases-fda\">U.S. Food &amp; Drug Administration (FDA)<\/a><\/li>\n<li>National Center for Advancing Translational Sciences: <a href=\"https:\/\/registries.ncats.nih.gov\/\">Rare Diseases Registry Program (RaDaR)<\/a><\/li>\n<li>National Organization for Rare Disorders (NORD): <a href=\"https:\/\/rarediseases.org\/iamrare-registry-program\/\">IAMRARE Registry Program<\/a><\/li>\n<li><a href=\"https:\/\/nymacgenetics.org\/virginia\/\">NYMAC Regional Genetics Network: Resources for Genetics in Virginia<\/a><\/li>\n<li><a href=\"https:\/\/www.vcuhealth.org\/services\/genetics\/resources\">VCU Health: Genetic and Community Resources<\/a><\/li>\n<\/ul>\n<h3 style=\"margin-bottom: 5px;\">Rare Disease Organizations:<\/h3>\n<ul>\n<li><a href=\"https:\/\/rarediseases.org\/\">National Organization for Rare Disorders<\/a> (NORD)<\/li>\n<li><a href=\"https:\/\/everylifefoundation.org\/\">EveryLife Foundation for Rare Diseases<\/a><\/li>\n<li><a href=\"https:\/\/rarediseasefoundation.org\/\">Rare Disease Foundation<\/a><\/li>\n<li><a href=\"https:\/\/www.rarediseasesinternational.org\/\">Rare Diseases International<\/a><\/li>\n<li><a href=\"https:\/\/www.camraredisease.org\/\">Cambridge Rare Disease Network<\/a><\/li>\n<li><a href=\"https:\/\/www.rarediseasediversity.org\/\">The Rare Disease Diversity Coalition<\/a> (RDDC)<\/li>\n<li><a href=\"https:\/\/www.rareconnect.org\/en\">Rare Connect<\/a><\/li>\n<li><a href=\"https:\/\/globalgenes.org\/\">Global Genes: Allies in Rare Disease<\/a><\/li>\n<li><a href=\"https:\/\/geneticalliance.org\/\">Genetic Alliance<\/a><\/li>\n<li><a href=\"https:\/\/www.rarediseaseday.org\/\">Rare Disease Day<\/a><\/li>\n<li><a href=\"https:\/\/www.eurordis.org\/\">Eurordis:<\/a> Rare Diseases Europe<\/li>\n<\/ul>\n<h3 style=\"margin-bottom: 5px;\"><strong>Rare Disease Treatments, Research, Clinical Trials and Studies:<\/strong><\/h3>\n<ul>\n<li><a href=\"https:\/\/clinicaltrials.gov\/\">National Library of Medicine<\/a><\/li>\n<li><a href=\"https:\/\/www.childrenshospital.org\/programs\/precision-medicine-service\/rare-disease-cohorts\">Boston Children\u2019s Hospital: Rare Disease Cohorts<\/a><\/li>\n<li><a href=\"https:\/\/www.chp.edu\/our-services\/rare-disease-therapy\">UPMC Children\u2019s Hospital of Pittsburgh: Center for Rare Disease Therapy<\/a><\/li>\n<li><a href=\"https:\/\/childrensnational.org\/departments\/rare-disease-institute\">Children\u2019s National Hospital: Rare Disease Institute<\/a><\/li>\n<li><a href=\"https:\/\/www.rarediseases.ucla.edu\/\">UCLA California Center for Rare Diseases<\/a><\/li>\n<li>National Organization for Rare Disorders (NORD): <a href=\"https:\/\/rarediseases.org\/for-patients-and-families\/information-resources\/info-clinical-trials-and-research-studies\/\">Current Clinical Trials and Studies<\/a><\/li>\n<li><a href=\"https:\/\/www.rarediseasesnetwork.org\/\">Rare Diseases Clinical Research Network<\/a><\/li>\n<li><a href=\"https:\/\/undiagnosed.hms.harvard.edu\/about-us\/\">Undiagnosed Diseases Network<\/a><\/li>\n<li>National Center for Advancing Translational Sciences: <a href=\"https:\/\/ncats.nih.gov\/trnd\">Therapeutics for Rare and Neglected Diseases<\/a><\/li>\n<li><a href=\"https:\/\/raredisease.powellcenter.med.ufl.edu\/about-us\/\">University of Florida Powell Center for Rare Disease Research and Therapy<\/a><\/li>\n<li><a href=\"https:\/\/www.cureraredisease.org\/\">Cure Rare Disease<\/a><\/li>\n<li><a href=\"https:\/\/irdirc.org\/\">International Rare Diseases Research Consortium (IRDiRC)<\/a><\/li>\n<li>Rare Diseases Clinical Research Network: <a href=\"https:\/\/www.rarediseasesnetwork.org\/research-groups\">Rare Diseases Research Groups &amp; Studies<\/a><\/li>\n<li><a href=\"https:\/\/calvin.edu\/research\/rare-disease\/\">Calvin University: Rare Disease Research and Support<\/a><\/li>\n<\/ul>\n<h3 style=\"margin-bottom: 5px;\"><strong>Caregiver and Patient Resources:<\/strong><\/h3>\n<ul>\n<li><a href=\"https:\/\/www.angelaidcares.org\/\">Angel Aid<\/a><\/li>\n<li>National Organization for Rare Disorders (NORD): <a href=\"https:\/\/rarediseases.org\/living-with-a-rare-disease\/\">Living with a Rare Disease<\/a><\/li>\n<li><a href=\"https:\/\/www.caregiving.org\/rare\/\">National Alliance for Caregiving: Rare Disease Caregiving<\/a><\/li>\n<li><a href=\"https:\/\/giveanhour.org\/rarecaregivers\/\">Give an Hour: Rare Caregivers<\/a><\/li>\n<li><a href=\"https:\/\/resource-hub.globalgenes.org\/kb\/article\/276-mental-health-and-self-care-resources-for-rare-patients-and-caregivers\/\">Global Genes:<\/a> Mental Health and Self Care Resources for Rare Patients and Caregivers<\/li>\n<li><a href=\"https:\/\/courageousparentsnetwork.org\/\">Courageous Parents Network<\/a><\/li>\n<li>Make-A-Wish Foundation: <a href=\"https:\/\/wish.org\/va\">Greater Virginia<\/a><\/li>\n<\/ul>\n<h3 style=\"margin-bottom: 5px;\">Virginia Resources:<\/h3>\n<ul>\n<li><a href=\"https:\/\/www.vdh.virginia.gov\/\">Virginia Department of Health<\/a><\/li>\n<li><a href=\"https:\/\/www.dmas.virginia.gov\/\">Virginia Department of Medical Assistance Services<\/a><\/li>\n<li><a href=\"https:\/\/doe.virginia.gov\/\">Virginia Department of Education<\/a><\/li>\n<li><a href=\"https:\/\/dbhds.virginia.gov\/\">Virginia Department of Behavioral Health and Developmental Services<\/a><\/li>\n<li>Virginia Commonwealth University: <a href=\"https:\/\/partnership.vcu.edu\/\">Partnership for People with Disabilities<\/a><\/li>\n<\/ul>\n<h3 style=\"margin-bottom: 5px;\">Virginia Department of Health Resources:<\/h3>\n<ul>\n<li><a href=\"https:\/\/www.vdh.virginia.gov\/bleeding-disorders-program\/\">Bleeding Disorders Program<\/a><\/li>\n<li><a href=\"https:\/\/www.vdh.virginia.gov\/care-connection-for-children\/\">Care Connection for Children (CCC)<\/a><\/li>\n<li><a href=\"https:\/\/www.vdh.virginia.gov\/child-development-services\/\">Child Development Services<\/a><\/li>\n<li><a href=\"https:\/\/www.vdh.virginia.gov\/care-connection-for-children\/metabolic-formula-and-food-program-2\/\">Metabolic Formula and Food Program<\/a><\/li>\n<li><a href=\"https:\/\/www.vdh.virginia.gov\/newborn-screening\/\">Newborn Screening Programs<\/a><\/li>\n<li><a href=\"https:\/\/www.vdh.virginia.gov\/sickle-cell-programs\/\">Sickle Cell Awareness Program<\/a><\/li>\n<\/ul>\n<h3 style=\"margin-bottom: 5px;\">Education and Information:<\/h3>\n<p style=\"margin-bottom: 0; margin-top: 0;\"><strong>Rare Disease Council Educational Handout<\/strong><\/p>\n<table style=\"height: 27px;\" width=\"200\">\n<tbody>\n<tr>\n<td style=\"width: 200px;\"><a href=\"https:\/\/www.vdh.virginia.gov\/content\/uploads\/sites\/211\/2025\/07\/RareDisease-handout1-July2025.pdf\">Download Version 1<\/a><\/td>\n<td><a href=\"https:\/\/www.vdh.virginia.gov\/content\/uploads\/sites\/211\/2025\/07\/RareDisease-handout2_July2025.pdf\">Download Version 2<\/a><\/td>\n<\/tr>\n<\/tbody>\n<\/table>\n<\/div>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"<p>Rare Disease Diagnosis and Education: Genetic and Rare Diseases (GARD) Information Center National Center for Advancing Translational Sciences: Rare Diseases Research and Resources U.S. Food &amp; Drug Administration (FDA) National Center for Advancing Translational Sciences: Rare Diseases Registry Program (RaDaR) National Organization for Rare Disorders (NORD): IAMRARE Registry Program NYMAC Regional Genetics Network: Resources for [&hellip;]<\/p>\n","protected":false},"author":657,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_lmt_disableupdate":"no","_lmt_disable":"","footnotes":""},"tags":[],"class_list":["post-103","page","type-page","status-publish","hentry"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.3 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Resources - Rare Disease Council<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.vdh.virginia.gov\/rare-disease-council\/resources\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Resources - Rare Disease Council\" \/>\n<meta property=\"og:description\" content=\"Rare Disease Diagnosis and Education: Genetic and Rare Diseases (GARD) Information Center National Center for Advancing Translational Sciences: Rare Diseases Research and Resources U.S. Food &amp; 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