Genetic Diagnosis Support Groups
In addition to the genetic diagnosis groups listed below, parents and family members should consider connecting with their local Family Resource Center for more family support resources as well as Rare New England. Organizations listed in alphabetical order by diagnosis
Chromosome 22 Central
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/ for more information
Type 1 Diabetes Research Foundation
Breakthrough T1D offers peer and family support for children, teens and adults with Type 1 Diabetes. Two local Breakthrough T1D chapters host events in Massachusetts: Greater New England & Greater Connecticut and Western Massachusetts.
Eastern Mass. Fragile X LINKS Group
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/ to learn more.
Massachusetts Sickle Cell Association.
Sickle Cell Disease Family Support Group meets periodically at the Massachusetts Sickle Cell office. Email info@gbscda.org or call (617) 825-4595 for event schedule and family resources. Learn more about MSCA.
Prader-Willi Syndrome Association of New England
Prader-Willi Syndrome Association of New England 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 for details about our Facebook groups and other resources.
Rett Syndrome Angels
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.
Small for Gestational Age – MAGIC Foundation
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 to network with other families.
Spina Bifida Association of Greater New England
The Spina Bifida Association of Greater New England 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.
Tuberous Sclerosis Alliance of New England
The TSC Alliance 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 to be connected with your Massachusetts Regional Support Coordinator.
Turner Syndrome Society of The United States
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. or visit the national Turner Syndrome website.