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World Rare Disease Day

Posted by Bee For Battens in News | 0 comments

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Bee For Battens played its part in acknowledging World Rare Disease Day yesterday by joining the Genetic & Rare Disorders Organsiation .

The Genetic and Rare Disorders Organisation (GRDO) is a non governmental organisation acting as a national alliance for voluntary groups representing the views and concerns of people affected by or at risk of developing genetic or other rare disorders such as Battens Disease.

The mission of the Genetic and Rare Disorders Organisation is to provide a strong voice for voluntary groups representing people with or at risk of developing genetic or other rare disorders in order to achieve better support and services.

In addition to joining the GRDO, we are exceptionally proud to announce a most unique event taking place in the US. Noah Coughlan a native of Florida, whose grandfather hailed from Cork, set off on a 2500 mile "Run For Research" into Batten's Disease. Noah , our friends at the Battens Disease Research and Support Association (USA) and ourselves are delighted to be associated in raising awareness and funds for Batten's Disease.

We wish Noah every success in his huge task and will keep you updated on his progress. Along the route Noah will be wearing the Bee For Battens Logo & Tshirt and to mark St Patricks Day Noah will be in Phoenex Arizona proudly showing off our Bee and its little shamrock lapel pin!

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