{"id":1388741,"date":"2025-08-06T15:43:26","date_gmt":"2025-08-06T19:43:26","guid":{"rendered":"https:\/\/fcsn.org\/?post_type=resource&p=1388741"},"modified":"2026-02-13T17:06:37","modified_gmt":"2026-02-13T22:06:37","slug":"genetic-diagnosis-support-groups-massachusetts","status":"publish","type":"resource","link":"https:\/\/fcsn.org\/zh\/resource\/genetic-diagnosis-support-groups-massachusetts\/","title":{"rendered":"Genetic Diagnosis Support Groups"},"content":{"rendered":"
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Genetic Diagnosis Support Groups<\/h1>\n

In addition to the genetic diagnosis groups listed below, parents and family members should consider connecting with their local Family Resource Center<\/a> for more family support resources as well as Rare New England<\/a>. Organizations listed in alphabetical order by diagnosis<\/p>\n

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Chromosome 22 Central<\/h2>\n<\/header>\n
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Chromosome 22 Central is a parent-run support organization dedicated to Chromosome 22 Disorders\/Emanuel Syndrome. They started in 1997 with just a handful of families and now supports over 2000 families in all corners of the world, who have many different chromosome 22 disorders. The group provides information, message board, chat room, and listserv, as well as information about the biannual national conference. Visit https:\/\/c22c.org\/<\/a> for more information<\/p>\n

Type 1 Diabetes Research Foundation<\/h2>\n

Breakthrough T1D offers peer and family support for children,<\/a> teens<\/a> and adults with Type 1 Diabetes. Two local Breakthrough T1D chapters<\/a> host events in Massachusetts: Greater New England & Greater Connecticut and Western Massachusetts.<\/p>\n

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Eastern Mass. Fragile X LINKS Group<\/h2>\n<\/header>\n
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Fragile X LINKS Group hosts social and educational events, Parent Nights Out, and occasional conferences, as well as summer family get-togethers. Contact us at https:\/\/www.fraxa.org\/<\/a> to learn more.<\/p>\n

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Massachusetts Sickle Cell Association.<\/h2>\n<\/header>\n
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Sickle Cell Disease Family Support Group meets periodically at the Massachusetts Sickle Cell office. Email info@gbscda.org <\/a>or call (617) 825-4595 for event schedule and family resources. Learn more about MSCA<\/a>.<\/p>\n

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Prader-Willi Syndrome Association of New England<\/h2>\n<\/header>\n
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Prader-Willi Syndrome Association of New England<\/a> provides information and support, quarterly parent support groups, family recreation events, conferences every other year, parent to parent support, and informational newsletter. Call (941) 312-0400<\/a> for details about our Facebook groups and other resources.<\/p>\n

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Rett Syndrome Angels<\/h2>\n<\/header>\n
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The Rett Syndrome Angels hosts Massachusetts events, support groups and programs available throughout the year. Group typically meets on the 1st Thursday of the month at ARC of Massachusetts, Waltham. Contact us via our RS Angels website<\/a>.<\/p>\n<\/div>\n<\/div>\n

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Small for Gestational Age – MAGIC Foundation<\/h2>\n

The MAGIC Foundation offers resources and online support to families with children diagnosed as small for gestational age, endocrine conditions, growth hormone deficiency and disorders like Russell Silver Syndrome. Join the MAGIC Foundation Database<\/a> to network with other families.<\/p>\n

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Spina Bifida Association of Greater New England<\/h2>\n<\/header>\n
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The Spina Bifida Association of Greater New England<\/a> serves individuals living with Spina Bifida along with their families and caregivers located in MA, NH, VT, and ME. Programs and services have included Education Days, Financial Benefits, Social Events, Get Active, and Outreach with newsletters social media. Call 888.479.1900 for support and to learn about upcoming activities.<\/p>\n

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Tuberous Sclerosis Alliance of New England<\/h2>\n<\/header>\n
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The TSC Alliance<\/a> offers resources and referrals to help individuals living with Tuberous Sclerosis and their families. The TSC Alliance of New England is a group of TSC individuals, families, healthcare providers, board members, and volunteers. This group is led by volunteer leadership dedicated to furthering the mission of the TS Alliance in their local state(s) or region by dedicating themselves to finding a cure for TSC and improving the lives of those affected. Email communityleadership@tscalliance.org<\/a> to be connected with your Massachusetts Regional Support Coordinator.<\/p>\n

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Turner Syndrome Society of The United States<\/h2>\n<\/header>\n
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The Massachusetts Resource Group creates awareness and offers support and information to all those touched by TS. For more information about this group please e-mail us info@turnersyndrome.org<\/a><\/span>. or visit the national Turner Syndrome website<\/a>.<\/p>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n","protected":false},"author":51,"featured_media":1388891,"template":"","resources-categories":[303,305,237],"topics-filter":[272,314,270],"age_filters":[247,248,249,250,251],"language_filters":[308],"class_list":["post-1388741","resource","type-resource","status-publish","has-post-thumbnail","hentry","resources-categories-youth-young-adults","resources-categories-families","resources-categories-mass-family-voices","topics-filter-parenting","topics-filter-caregiver-support-wellbeing","topics-filter-medically-complex","age_filters-age-0-3","age_filters-age-3-5","age_filters-age-6-13","age_filters-age-14-22","age_filters-age-23","language_filters-english"],"translation":{"provider":"WPGlobus","version":"3.0.2","language":"zh","enabled_languages":["en","es","pt","ar","zh","vi"],"languages":{"en":{"title":true,"content":true,"excerpt":false},"es":{"title":false,"content":false,"excerpt":false},"pt":{"title":false,"content":false,"excerpt":false},"ar":{"title":false,"content":false,"excerpt":false},"zh":{"title":false,"content":false,"excerpt":false},"vi":{"title":false,"content":false,"excerpt":false}}},"acf":[],"yoast_head":"\nGenetic Diagnosis Support Groups - Federation for Children with Special Needs<\/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:\/\/fcsn.org\/resource\/genetic-diagnosis-support-groups-massachusetts\/\" \/>\n<meta property=\"og:locale\" content=\"zh_CN\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Genetic Diagnosis Support Groups - Federation for Children with Special Needs\" \/>\n<meta property=\"og:url\" content=\"https:\/\/fcsn.org\/resource\/genetic-diagnosis-support-groups-massachusetts\/\" \/>\n<meta property=\"og:site_name\" content=\"Federation for Children with Special Needs\" \/>\n<meta property=\"article:modified_time\" content=\"2026-02-13T22:06:37+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/fcsn.org\/wp-content\/uploads\/2025\/08\/pexels-rodnae-productions-8297552.jpg\" \/>\n\t<meta property=\"og:image:width\" content=\"720\" \/>\n\t<meta property=\"og:image:height\" content=\"1080\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/jpeg\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Est. reading time\" \/>\n\t<meta name=\"twitter:data1\" content=\"3 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\\\/\\\/schema.org\",\"@graph\":[{\"@type\":\"WebPage\",\"@id\":\"https:\\\/\\\/fcsn.org\\\/resource\\\/genetic-diagnosis-support-groups-massachusetts\\\/\",\"url\":\"https:\\\/\\\/fcsn.org\\\/resource\\\/genetic-diagnosis-support-groups-massachusetts\\\/\",\"name\":\"Genetic Diagnosis Support Groups - Federation for Children with Special Needs\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/fcsn.org\\\/#website\"},\"primaryImageOfPage\":{\"@id\":\"https:\\\/\\\/fcsn.org\\\/resource\\\/genetic-diagnosis-support-groups-massachusetts\\\/#primaryimage\"},\"image\":{\"@id\":\"https:\\\/\\\/fcsn.org\\\/resource\\\/genetic-diagnosis-support-groups-massachusetts\\\/#primaryimage\"},\"thumbnailUrl\":\"https:\\\/\\\/i0.wp.com\\\/fcsn.org\\\/wp-content\\\/uploads\\\/2025\\\/08\\\/pexels-rodnae-productions-8297552.jpg?fit=720%2C1080&ssl=1\",\"datePublished\":\"2025-08-06T19:43:26+00:00\",\"dateModified\":\"2026-02-13T22:06:37+00:00\",\"description\":\"Find family support for Massachusetts parents who have children with a genetic diagnosis or chronic condition.\",\"breadcrumb\":{\"@id\":\"https:\\\/\\\/fcsn.org\\\/resource\\\/genetic-diagnosis-support-groups-massachusetts\\\/#breadcrumb\"},\"inLanguage\":\"zh-CN\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\\\/\\\/fcsn.org\\\/resource\\\/genetic-diagnosis-support-groups-massachusetts\\\/\"]}]},{\"@type\":\"ImageObject\",\"inLanguage\":\"zh-CN\",\"@id\":\"https:\\\/\\\/fcsn.org\\\/resource\\\/genetic-diagnosis-support-groups-massachusetts\\\/#primaryimage\",\"url\":\"https:\\\/\\\/i0.wp.com\\\/fcsn.org\\\/wp-content\\\/uploads\\\/2025\\\/08\\\/pexels-rodnae-productions-8297552.jpg?fit=720%2C1080&ssl=1\",\"contentUrl\":\"https:\\\/\\\/i0.wp.com\\\/fcsn.org\\\/wp-content\\\/uploads\\\/2025\\\/08\\\/pexels-rodnae-productions-8297552.jpg?fit=720%2C1080&ssl=1\",\"width\":720,\"height\":1080,\"caption\":\"A parent holds their disabled child on their shoulder. 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