Volunteering: Looking for a PR Volunteer

11th March 2015


This year, we would like to continue to build our on and off line presence including marketing and public relations. That’s why we are recruiting for an ambitious, hard-working PR Intern to join our small lively team to help us reach more people and raise funds for the charity. If you’re interested in applying, please send a cover letter and CV to

Other news
Earlier this year, we were proud to announce that Sarah, Duchess of York was to become an ambassador for the charity. Although, Sarah, Duchess of York couldn’t take on the role as a patron – she did however want to help us raise awareness of Adrenoleukodystrophy (ALD) and support the charity, when and where she can.

Over the weekend, Sarah, Duchess of York kindly wrote a tweet for #RareDiseaseDay. If you use Twitter, please take two minutes to retweet her tweet today.

Sarah Ferguson Tweet


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. ...

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