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, CA) Rare Disease affects 350 million people worldwide, consisting of 7,000+ identified diseases and disorders. Currently less than 5% of all rare diseases have any type of therapy or treatment, and much of the early [...]
Genzyme Announces Winners of Patient Advocacy Leadership Award Grants
CAMBRIDGE, Mass., Aug 17, 2011 (BUSINESS WIRE) — Genzyme, a Sanofi company , today announced the first recipients of the Genzyme Patient Advocacy Leadership (PAL) Awards. This global grant program supports non-profit organizations that work on behalf of patients living with lysosomal storage disorders (LSDs), a group of rare, inherited disorders that cause progressive and [...]
Carrier Screening in the Era of Genomic Medicine
“It’s not so bad to find out that you are a carrier…[but] finding out that you are a carrier of SMA [spinal muscular atrophy] from your child dying is the wrong way to do it.” -Deborah Heine, executive director of the Claire Altman Heine Foundation Like many parents of children with rare genetic diseases, Deborah [...]
Life Technologies makes a 'Big Hit' with rare disease patients and their families!
Life Technologies host rare disease families at the San Diego Padres Season Opener against the San Francisco Giants! What a great evening had by all who attended this exciting event hosted by Life Technologies. Rare disease families in the southern California area were treated to an afternoon of baseball in the Life Technologies Stadium Suite, [...]
The Global Genes Project Aims to Battle Rare Disease Through the 'Vote4Hope' Campaign and Pepsi Refresh Competition
The Global Genes Project Aims to Battle Rare Disease Through The ‘Vote4Hope’ Campaign and Pepsi Refresh Competition Over 15 Million Children in America Are Estimated To Suffer From 7000 Unique Rare Diseases; Children Unite As ‘Ambassadors of Hope’ To Win $250K Pepsi Grant For The Global Genes Fund DANA POINT, CA – September 1, 2010 [...]