Genzyme Announces Winners of 2012 Patient Advocacy Leadership Awards

Genzyme is committed to discovering and delivering transformative therapies for patients with rare and special unmet medical needs, providing hope where there was none before.

Organization: Berry & Company PR on Behalf of Genzyme Submitted by: Monique Reuben CAMBRIDGE, Mass. – Genzyme, a Sanofi company (EURONEXT: SAN and NYSE: SNY), today announced the recipients of the Genzyme Patient Advocacy Leadership (PAL) Awards. This global grant program supports outreach programs by […]

Jewelry Designer Lynda Carson of Fresh Baked Designs Donates Bracelets To Families Affected By Rare Diseases

Blue Inspired Bracelet for Hope By Fresh Baked Designs

Thanks to Lynda Carson of Fresh Baked Designs for donating another beautiful bracelet to the 7000 Bracelets for Hope program. As a retired teacher, Linda has turned her jewelry making hobby, that first began in her kitchen, into a small business.  Lynda has also used […]

Juvenile Myositis and Rett Syndrome Foundations Team Up To Ask For Votes To Win Top Chase Community Giving Grant

Help the Cure JM Foundation win a $250,000 Chase Community Giving Research Grant

A minute of your time means a lifetime to kids with Juvenile Myositis and Rett Syndrome! Cure JM Foundation & Rett Syndrome Research Trust have partnered to double voting outreach and ensure that two rare, life-threatening, children’s diseases get desperately needed funding for research through […]

Ehlers-Danlos Syndrome Misdiagnosed In Holly As “Growing Pains” From Playing Too Many Sports

Holly suffers from Classical Ehlers-Danlos Syndrome and Postural Orthostatic Tachycardia

My name is Holly and I started having problems with my hip when I was 17 years old. My GP said that it was “growing pains” and that I was “playing too many sports” and gave me painkillers and sent me on my way. Then […]

Rare Hands Filled With Hope

Rare Hands Filled With Hope

In this picture, you will see hands from rare patients suffering from Scleroderma, Raynaud’s, Sjogren’s, Psoriatic Arthritis, Digital Ulcer’s, Sclerodactyly, MS, Rheumatoid Arthritis, to name a few. These are are but beautiful hands of ours — hands filled with hope! Submitted by: Scleroderma & Autoimmune […]

Whole Exome Sequencing Identifies Mystery Gene in 3 year old Gavin Stevens


Gavin Stevens – age 3, was born with Leber’s Congenital Amaurosis (LCA).   LCA is a rare orphan disease that affects 3,000 individuals in the country, causing complete blindness or severe visual impairment, typically at birth. Of all the retinal degenerations, LCA is the most severe, […]

Stem Cells Derived From Umbilical Cord Banking Have Great Potential to Treat Rare Diseases

Alexandra Maxwell is a freelance writer with a particular interest in the medical uses of cord blood.

Learn the facts about umbilical cord blood banking Umbilical cord blood banking involves harvesting the blood from a newborn’s umbilical cord at the time of birth, to store for possible medical use in the future. The procedure is painless to mother and infant and needs […]