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National Rare Disease Steering Group

Posted by Bee For Battens in News | 0 comments

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Bee For Battens is proud to announce that Tony Heffernan, founder of Bee For Battens has been appointed as the Parent & Patient Representative on the Department of Healths Steering Group For Rare Disease.

The group which will work with the Deptartment of Health in creating and developing  a 5 year national plan on rare disease. This work will be done with regard to the context of the Euorpean Council Recommendation on Rare Disease (2009).

As per the Minister For Healths request to include Parent & Patient Representation on the Steering Group, Mr. Heffernan was appointed following consultation between The Genetic Rare Disease Organisation, Medical Research Charities Group and the Irish Platform for Patients' Organisations, Science & Industry. 

Mr Heffernan, is the father of two children who were diagnosed with the Ultra Rare & Fatal Disease , Late Infantile Battens Disease. The Heffernans' Children, Liam (2)  who recently participated in a medical treatment trial in New York , and Saoirse who lost here battle for life in January 2011 aged just 5, will provide the motivation to Tony to participate fully in the large task ahead.

With a tight time frame to complete the work, meetings will take place frequently to monitor progress and developement of the plan.




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