Breaking Down Barriers grant will help us raise awareness of Wolfram Syndrome

Posted on the 26th February 2018

WellChild’s Wolfram Syndrome Family Coordinator Jody Blake has recently joined the Breaking down Barriers Project (funded by The Sylvia Adams Charitable Trust) and WellChild has been awarded a grant of £5000.

The grant will enable Jody and the team at WellChild to raise awareness of Wolfram Syndrome throughout the UK, especially in areas where there are increased numbers of people from South Asian communities.

Information about Wolfram Syndrome will be developed in Urdu and Punjabi and sent to Paediatric Diabetes Departments and Visual Impairment Teams.

Because Wolfram Syndrome is such a rare and complex disorder, it can be difficult for those with the condition or undergoing diagnosis to access local information and advice. This can leave them and their families feeling isolated and alone.

In partnership with Birmingham Children’s Hospital, WellChild’s Wolfram Syndrome Family Coordinator, works with families with children and young people affected by the condition; to provide information, support and advice.

Breaking Down Barriers is a project which aims to facilitate patient organisations and support groups to join together and share examples of best practice, develop new guidelines to highlight effective ways to support families at increased risk of having a child with a genetic disorder and address difficulties and inequalities experienced by families in accessing mainstream services.

Jody Blake said: “We would like to thank the Breaking Down Barriers project for this grant which will prove invaluable in helping us with our work to raise awareness of Wolfram Syndrome.”

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