Home > Help for Families > What Support is Available? > Other Trisomy Support Organisations

Other Trisomy Support Organisations

Registered Charities

There are a number of UK registered charities that provide information and support to families affected by trisomy 18 and trisomy 13.

  • Emily's Star This charity was set-up in June 2013 in memory of Emily Elizabeth who was lost to trisomy 18 at 26 days old. Currently it supports families and nurses in the Milton Keynes area who are caring for children with life-limiting or life-threatening illnesses. 
  • Caoimhe's Trust For Edwards Syndrome was established in May 2012 in memory of Caoimhe. It is based in Aberdeen and supports families across Scotland. 
  • The Chromosome 18 Registry and Research Society (Europe)  is a charity set up to bring European families affected by any chromosome 18 abnormalities together to share information and experiences. It covers all chromosome 18 abnormalities: 18q-, 18p-,Ring 18,Tetrasomy 18p and inversions of chromosome 18. It is registered as a charity in Scotland (SC040399)

International Organisations

  • Find out about other SOFT organisations around the world.
  • International Trisomy 13/18 Alliance (ITA) is a volunteer, not-for-profit organization focusing on trisomy 13 and trisomy 18. The ITA website includes research publications about medical interventions and outcomes for children with trisomy 13 and 18. You can also download a copy of the most recent newsletter (Dec 2015).