A sad farewell to a very dear friend

30th March 2017

We have news to share regarding our very dear friend, Mark Bostock, pictured above with his daughter at our 2016 Community Weekend. Many of you knew Mark and it is with sadness more…

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, more…

Our new T-shirts!

23rd March 2017

Check out our stylish new t-shirts modelled by staff members Steven and Natasha. They cost £12.5o each including postage to the UK. Please contact us if you would like to order more…


20 hours ago

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 or ‪404-778-8518‬. ...

View on Facebook