The Schinzel-Giedion Syndrome Foundation is Appointing New Trustees

The mission of The Schinzel-Giedion Syndrome Foundation is to provide support to families caring for a child with Schinzel-Giedion Syndrome (SGS), to raise awareness of this very rare genetic condition and to facilitate and support the vital medical research that will help us find better treatments to improve the quality and length of life of children living with SGS.

The Schinzel-Giedion Syndrome Foundation is a registered UK charity (Registered Charity Number 1186327) established in 2019 by an international group of parents of children with SGS. We represent children with SGS and their families living all around the world.

We are a small but growing voluntary organisation with ambitious plans for the future. Our vision is for a future when all children with SGS will receive a rapid genetic diagnosis and have access to effective medical and gene therapies to ensure they live longer, healthier and happier lives.

To help us grow and develop we now need additional volunteer Trustees to join us.

Trustees do not need to be the parent or carer of a child of SGS, but an interest in rare genetic disease and the desire to learn about the condition to enable you to advocate effectively for our children is essential.

Whether you are an experienced Trustee or would like to take your first step at Board level, we want to hear from you! We welcome applications from all ages, nationalities and backgrounds. Proficiency in spoken and written English is necessary as Board meetings are conducted in English.

Our trustees could come from any background, but we have specific gaps in the following areas:

  • Accounting
  • Fundraising
  • Press and PR
  • Digital
  • Healthcare and Policy

As a Trustee you must be prepared to take an active and ‘hands on’ part in the running of the Foundation, which will involve working on specific allocated responsibilities. An expected time commitment would be 2-4 hours per week flexibly delivered around your other commitments. Trustees Board meetings are held virtually on Zoom up to 6 times per year, so location isn’t a barrier, and each meeting may last up to 2 hours.  The duration of the Trustee position is an initial 2 years, which can be extended to 4 years.

If you would like to join us and help to make a difference to the lives of children and their families living with rare genetic neurodevelopmental disorders like SGS, please contact Nuala Summerfield, Chair of The Schinzel-Giedion Syndrome Foundation on for an informal chat and to find out more.

You can also find out more about Schinzel-Giedion Syndrome and the Foundation on our website

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