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Rare Disease Day: Days to go!

18th February 2015

Rare Disease Day

Every year, we join together to raise awareness of Rare Diseases, and the impact it has on patients, families and carers. Collectively, Rare Diseases affects more than 30 million people throughout the European Union.

Unfortunately, patients and families still face an uphill struggle when it comes to getting access to care, treatment and support from health and social care services. This Rare Disease Day, we are again joining together with thousands of individuals, researchers and patient support groups to highlight what it is like to live with a rare disease.

Would you like to join us in spreading awareness this Rare Disease Day? Find out more about what you can do: www.aldlife.org/get-involved/events/rare-disease-day

Don’t forget that some of the most simple things can help to. Such as sharing using the social media buttons below.
 
 
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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