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Rare Disease Day: Living with a Rare Disease

2nd March 2015

Rare Disease Day

This year, Rare Disease Day has been about highlighting what it is like to live with a rare disease – patients, family members and carers alike.
 
Clare Elphick got Rare Disease Day to a great start, getting a family picture chosen to represent Rare Disease Day on their website. It was a delight for an ALD Life member to be chosen to represent Rare Disease Day – well done Clare for her effort.
 
Kelly Strenges attended an event at Florida State Capitol to gain support for Newborn Screening Bill, Gabriel’s Law. Kelly Strenges sent this picture of the event – where you can find our logo, which June Brown kindly used last year to raise awareness of Rare Disease Day. We would like to thank both Kelly and June for supporting ALD Life in the United States.
 
Sara Hunt, CEO, and Karen Harrison, Project Manager, attended a reception at the House of Commons to bring together patients and families, health and social care professionals, researchers and patient support groups. They also attended Rare Disease UK’s tea party to listen to discussions and network with patients and organisations.
 
Finally, you guys have been fantastic online, using our Twibbon and sharing on Facebook and Twitter. We would like to thank you for your support. If you would like to help us continue to raise awareness, please check out some things you can do: www.aldlife.org/get-involved/events/rare-disease-day
 
 
Image: Claire Elphick and family, representing Rare Disease Day slogan ‘Day-by-day, hand-in-hand’.

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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 dawn.laney@emory.edu or ‪404-778-8518‬. ...

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