Genetic Disorders UK grant for DBA UK!

DBA UK are delighted to announce details of a GBP 10,000 grant towards the DBA family weekend in 2016.

Genetic Disorders UK

 The grant has been awarded by Jeans for Genes Day / Genetic Disorders UK, following our successful application/presentation in 2014. Jeans for Genes Day raises money for Genetic Disorders UK and aims to change the world for children with genetic disorders.

As part of the grant collaboration framework, we have been asked to provide the contact details of five families who would be happy to act as a case study / media volunteer for our charity.

 What is needed:

  • A child (under 18yrs) who is affected by Diamond Blackfan Anaemia
  • Happy to share their story to help raise awareness and understanding.
  • Able to share their identity with the public
  • Confident to be interviewed (in cases where the child is too young/unable to communicate their story themselves, a parent/guardian who is confident to do this for them)
  • Ideally not appeared in press before (or too often).

Why it is worth your time?

Jeans for Genes Day / Genetic Disorders UK need to place articles of interest and in particular, case studies, into national and regional press in the run up to the national fundraising day in September 2015, Jeans for Genes Day, in order to raise the general public’s awareness of:

  1. The genetic disorder they are affected by
  2. Genetic disorders in general
  3. The work of Jeans for Genes Day / Genetic Disorders UK
  4. The work of DBA UK and the 2016 DBA family weekend that Jeans for Genes/ Genetic Disorders UK are partially funding
  5. Personal stories are essential to help encourage acceptance and understanding of genetic conditions.

If you are interested in acting as a case study/media volunteer for DBA UK please contact martin.winter@diamondblackfan.org.uk or alternatively message Martin via Facebook and he will send you further details. Please note, the deadline for volunteers is Friday 6th February 2015.

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