NGF Mourns the Loss of Dr. Roscoe Brady

Summary: The National Gaucher Foundation today mourns the passing of Dr. Roscoe Owen Brady, M.D., a pioneer in medicine and the father of enzyme therapy for lysosomal diseases, including Gaucher disease. Rockville, MD, June 15, 2016 — The National Gaucher Foundation today mourns the passing of Roscoe Owen Brady, M.D. Dr. Brady’s foundational studies paved… Read More »

New Gaucher research protocol enrolling participants

Are you an adult 18 – 65 years of age who has been diagnosed with Gaucher disease and are not currently receiving treatment (within the past 12 months)? If so, there is a new research protocol enrolling participants that may be for you. The research focuses on the possible improvement in bone involvement associated with… Read More »

Helping kids battle a rare disease

In the blink of an eye, life completely changed for Eric and Ana Garay of Albuquerque, New Mexico when they received a Gaucher disease diagnosis for their 3 year old daughter. After a year of searching, they finally had an answer. Then another blink, and they learned their 9 year old son too has Gaucher… Read More »

Chart Your Own Course 2016 – A Scholarship Program for the Lysosomal Storage Disorder Community

Sanofi Genzyme established the Chart Your Own Course program four years ago to help ensure the educational dreams of those in the LSD community become reality. Fifteen scholarships of $2,500 each will be awarded. Eligible applicants are individuals who are diagnosed with an LSD, regardless of treatment status, US citizens or legal and permanent residents… Read More »

Was your child recently diagnosed with Gaucher Disease?

Find out about a research study for children with Gaucher Disease Why should my child take part? In addition to contributing to medical research, all study participants will receive at no cost: – Full general and neurological exams by an expert in Gaucher Disease – Bone density evaluation of lumbar spine by DXA (dual energy… Read More »

RARE Patient Advocacy Symposium May 6, 2016 in Philadelphia

Join rare disease patient advocates and caregivers to learn and network! Register today to join Global Genes and the UPenn’s Orphan Disease Center are collaborating for the first time on the RARE Patient Advocacy Symposium, a half-day patient advocate education program on May 6, 2016 in Philadelphia at the Sheraton Philadelphia University City Hotel. Advocates… Read More »

Gaucher Stories

Fairleigh Dickinson University graduate student, Lauren Edwards, has Gaucher disease. Her journey to diagnosis inspired her to create a blog dedicated to sharing the stories of those affected by Gaucher disease, giving them a platform in which they can express themselves and be inspired by the stories of others. To read stories already shared, or… Read More »

Lindsay Zuckerman Dance-A-Thon Video

Twelve year old Lindsay Zuckerman is an inspiration! We’ve shared about her determination to spread awareness about Gaucher disease through hosting a Dance-A-Thon last month. With the help of her family and immense community support, Lindsay raised over $16,000 for the National Gaucher Foundation to help provide resources an support to Gaucher patients and their… Read More »

Gaucher Disease Study

Palo Alto University graduate student Andrea Alioto, M.S., is directing her Ph.D. dissertation research, under Dr. Wendy Packman, J.D., Ph.D., towards better understanding the impact of living with a chronic illness upon children and young adults and their families. The study, Psychological & Neurocognitive Impacts of Gaucher Disease, Type 1, on Pediatric & Young Adult… Read More »

Lindsay Zuckerman Dance-A-Thon

Twelve year old Lindsay Zuckerman, who has Gaucher disease, was determined to raise awareness of Gaucher disease Type 1 as well as funds to support the National Gaucher Foundation all while incorporating her love of dance and celebrating life. With the help of her parents, Evan and Michelle, a hugely successful Dance-A-Thon occurred on January… Read More »

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