Sanofi Genzyme Announces Torch Awards

SANOFI GENZYME – We are proud to announce the first annual Sanofi Genzyme TORCH Awards! The TORCH Awards are your opportunity to recognize individuals of all ages who have made a significant contribution to the Lysosomal Storage Disorder (LSD) community. The nomination process is simple. To nominate, you will be asked to submit your answer… Read More »

New York Conference Raises Awareness for Gaucher Disease

As a culmination of Gaucher Awareness Month, on October 30, 2016 the National Gaucher Foundation hosted its fourth annual NY symposium to present the latest research and community innovations, and bring the Gaucher community together. Click here to read the article featured in Tablet on the event.

Gaucher Disease and Parkinson: An Opportunity to Participate in a Study

Researchers have linked Gaucher disease to a slightly increased risk of having Parkinson disease (PD) later in life. This is also true for carriers, who do not have the disease but can pass it to their children. In the general population, individuals have a 2 to 4 percent chance of developing Parkinson disease past age 60…. Read More »

Sanofi Genzyme announces “Seven Tests for Managing Gaucher”

It’s important to monitor Gaucher disease with regular assessments. For Gaucher Awareness Month, Sanofi Genzyme has developed a website to help you better understand the tests that your doctor may use to help better manage your disease. Called “Seven Tests for Managing Gaucher,” the site contains information on Gaucher tests and disease management goals using… Read More »

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 »

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