hide and seek foundation
'Denim Jean' Ribbon Unveiled To Promote Rare Disease Awareness
By nboice on February 1, 2010
Campaign Brings Together Support from over 90 Corporations, Non-Profit Foundations, Research Institutions, Hospitals and Advocacy Groups; New Blue Jeans Denim Ribbon Unveiled To Promote Rare Disease Awareness DANA POINT, CA – February 1, 2010 – Hope – It’s In Our Genes.™ The Children’s Rare Disease Network today announced the Global Genes Project, an initiative designed [...]
Posted in Featured, Global Community, Global Genes Project, News | Tagged 23andMe, Amicus Therapeutics, Better Health, BioMarin, CheckOrphan, Children, children wtih rare disease, childrens rare disease network, CollabRx, Coriell Institute, Counsyl, denim ribbon, DonateGames.org, FasterCures, FreeForm, genetic alliance, Geni.com, Genzyme, Global Genes Project, hide and seek foundation, Jackson Laboratory, Kakkis EveryLife Foundation, Knome, Life Technologies, Lili Claire Foundation, Mayo Clinic and Shire, NIH, Orphan Drug Act, Public Health, Rare Disease, rare disorders, therapy development, World Rare Disease Day | Leave a response
Cherry Red Spot – Telltale Sign of Neurometabolic Disorders
By StephLynStill on March 4, 2009
I received a call today at The Hide and Seek Foundation from a woman who’s cousin’s seven month old son, Ben, has been displaying possible symptoms of a neurometabolic disease. You know, darting eyes, not rolling over, trunk weakness. He went to a neurologist yesterday and they discovered a cherry red spot, a telltale sign [...]
Posted in Bench to Bedside | Tagged Cherry Red Spot, enzyme replacement therapy, Farber disease, hide and seek foundation, lysosomal storage diseases, Metachromatic Leucodystrophy, Mucolipidosis III, neurometabolic disorder, neuronal lipid storage disorders, Niemann Pick disease, Perifoveal White Patch, rare disease cherry red spot, Sandhoff disease, sialidosis, Tay-Sachs disease, The Project Charity -- The Children's Rare Disease Network | Leave a response