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.  (See our section on About Trisomy for further info)

Mission Statement

SOFT UK was consequently started to provide a much-needed support network for children and families affected by Pataus' and Edwards' Syndrome and related disorders. Since its humble origins almost 30 years ago, SOFT UK has grown into a much larger organisation run by families for families.

Ninety percent of the volunteers and staff team have a link with Trisomy within their own families, helping to alleviate the isolation that comes with a Trisomy diagnosis. Run by families for families, there is always an empathic ear armed with the latest research and access to support.

Registered Charity: 1002918 (England and Wales) SC043341

SOFT UK

Shaun Dowdall

This department manages the organization's charitable initiatives and oversees communication strategies to promote its mission.

SOFT UK

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Charity Operations

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SOFT UK

Org chart

Teams

Charity Operations

Offices

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