Tag: rare disorder

A total of 31 posts are filed under rare disorder
5 Things I’ve Learned About Living With a Rare Disease
It has been over 2 years now since my 4 year old son was diagnosed with a rare disease. The first year was spent getting our bearings and… Continue Reading
Sean Suffers From M-CMTC and Hydrocephalus Yet Brings an Infectious Laugh To Everyone He Knows
My name is Emily, and my son Sean is 12 years old and was diagnosed with M-CMTC (macrocephaly-cutis marmorata telangiectatica congenita… Continue Reading
Pfizer Announces FDA Approval of ELELYSO™ for Type 1 Gaucher Disease and Personal Support Program For Patients
On May 1, 2012, Pfizer announced the FDA approval of ELELYSO™ (taliglucerase alfa), an enzyme replacement therapy (ERT) for adults… Continue Reading
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
Charity Tuesday: Courage to Make a Difference
It’s Charity Tuesday and we want to give a shout-out to a new charity called “Courage to Make a Difference” founded by Chris Dutcher.… Continue Reading
Submit your art and win an iPod Touch!
Calling all artists, kids, parents, friends & family!  Share your art that captures the beauty, power, love, pain and courage of the rare… Continue Reading
Brad Paisley Lends Voice to New Song "Hard Life" to benefit A-T Children’s Project
Brad Paisley sings new song written by Joe Kindregan, A-T patient BRAD PAISLEY LENDS VOICE TO NEW SONG “HARD LIFE” Written By Joe… Continue Reading
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