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Government announcement on Rare Disease

29th March 2017

The Government has finally announced it will develop plans to implement the UK Strategy for Rare Diseases in England.

At a Westminster Hall Debate yesterday afternoon Philip Dunne, Minister of State for Health, stated “I can confirm to the House that I have agreed with the Chief Executive of NHS England that by the end of this year he will deliver an implementation plan for those of the 51 commitments of the UK strategy for rare diseases for which NHS England has lead responsibility.”

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ALD Life has been supporting campaigns to implement this strategy, developed by Rare Disease UK, part of Genetic Alliance, since concept. We are delighted that there is now a public statement confirming intent to implement these vital recommendations.

For the full report please click here.

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ALD Life

Emory University is looking for families in Georgia with individuals who were diagnosed through newborn screening with ALD, as part of efforts to include ALD in the Georgia newborn screening panel. Participants would be speaking with Emory University via phone or email at their convenience. If you would like to give your input, please reach out to Dawn Laney with Emory University at dawn.laney@emory.edu or ‪404-778-8518‬. ...

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