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Students help raise awareness of rare disease

Tracy Lynch, chief executive of Wolfram Syndrome UK, with SRWA students. SUS-141103-145823001

Tracy Lynch, chief executive of Wolfram Syndrome UK, with SRWA students. SUS-141103-145823001

SIXTH-FORM students at the Sir Robert Woodard Academy have presented a series of assemblies about Wolfram Syndrome, a rare disease that mostly affects children.

The assemblies led up to the national Rare Disease Day and included pieces of film captured at the Wolfram International Conference  before Christmas.

As well as the assemblies, the students organised the sale of Wolfram UK wristbands at break time and lunchtime and a cake sale in the staffroom, raising £296.

Chief executive for Wolfram Syndrome UK, Tracy Lynch, visited the academy to support the students.

“I would like to thank the students for all the work they have put into the presentations they gave and for all their efforts and help in raising awareness of Wolfram Syndrome,” she said.

“Without the support of people like them, these rare conditions often go unheard off.

Rare Disease Day is now in its 6th year helping to raise awareness.

In November 2013, a UK strategy for rare diseases was announced and it is hoped it will bring about a clear personal care plan for each patient as well as specialised clinical-support centres.

 

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