SOFT UK

 Patient Groups / Posted 3 weeks ago by Jo McPherson / 24 views

SOFT UK was founded in 1990 by Christine Rose and Jenny Robbins. As mothers, they were unfortunate enough to discover first-hand the lack of support and information available to families affected by Patau’s syndrome (Trisomy 13), Edwards’ syndrome (Trisomy 18) and related disorders.

SOFT UK is committed to raising awareness about Trisomy conditions in our communities, to improve the experiences of our families.  We work in a range of multi-agency partnerships to raise the profile of Trisomy conditions, increase awareness of SOFT UK and its work and to provide training for professionals.  SOFT UK has professional advisers across a range of relevant specialisms, who contribute to all our work and provide a valuable network for professionals. SOFT UK regularly participates in research projects and consultations as a voice for families affected by Trisomy and provides information and training opportunitiesfor Health Professionals working in related fields.

In April 2022 M4RD featured Trisomy conditions on #MysteryMonday, covering the basics to help medics and HCPs be more aware of these conditions.  You can view the highlights here.

Contact details

UK https://www.soft.org.uk