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Tag: RARE Blog

A total of 62 posts are filed under RARE Blog
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Shakes and Stones — Life with Cystinuria and CIDP
Hi, my name is Andy. I was born in Watford in the UK back in 1975.  In 1994, I moved to Australia to attend University.  This is also the… Continue Reading
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Niko Syndrome – Our Search For A Diagnosis For A Rare Disease
Our eight-year-old Nico could likely give a pretty extensive tour of the Hospital for Sick Children (SickKids), his home away from home.… Continue Reading
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Marshall and Me – My Hero Brother Is Fighting Krabbe Leukodystrophy
At 17 months of age, he was diagnosed with a rare Leukodystrophy called Krabbe’s Disease. A genetic disorder affecting the nervous… Continue Reading
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Blog Hop for Rare Disease Day – Please Read, Share and Raise Awareness!
There are less than 30 days to World Rare Disease Day on February 29. We kick off our campaign this year as host of a Rare Disease Blog Hop.… Continue Reading
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Charities Unite Worldwide to Fund Research into Reversibility of Brain Damage Caused By Sanfilippo Syndrome
Charities Unite Worldwide to Fund Research into Reversibility of Brain Damage Caused By Sanfilippo Syndrome (RARE Project – Dana Point,… Continue Reading
Kyle and Jackson Watkins, with Lynn Watkins and Lisa Hubbard of Sempra Energy Supporting Global Genes Project
Sempra Energy and Kids Helping Kids Volunteers Supporting Global Genes Project
Sempra Energy Foundation and Southern California rare disease advocates work to raise awareness and volunteer for the Global Genes Project,… Continue Reading
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World RARE Disease Day at National Institutes of Health
On February 29, 2012, the National Institutes of Health (NIH) will celebrate the fifth annual Rare Disease Day with a day-long celebration… Continue Reading

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