NGF Community Blog

Ambassador Spotlight: Carrie Choate

Last year, we introduced you to our first group of elite NGF Ambassadors. This year, we will be sharing a closer look at each of our ambassadors and their journey with Gaucher disease. First up: Carrie Choate. What were the events leading up to your diagnosis? The events leading up to my diagnosis were a… Read More »

Topics: Ambassador Spotlight

A Patient’s Perspective: The Importance of Gaucher Specialists

Contributed by Stu Berman Having been diagnosed in the early 1970’s, I have been a Gaucher patient for most of my life. Over these years, I have had the pleasure of meeting many GD patients, both at NGF meetings as well as other GD patient meetings at various hospitals. These interactions have given me the… Read More »

Topics: About Gaucher Disease

In Memoriam: Dr. Henry Mankin

The National Gaucher Foundation is saddened to hear of the passing of Dr. Henry Mankin. For forty years, Dr. Mankin was the chief of orthopedics at the Massachusetts General Hospital and at Harvard Medical School. Born in Pittsburgh, he was the son of immigrants from Lithuania. Dr. Mankin was a beloved member of the medical… Read More »

Topics: About Gaucher Disease

National Gaucher Foundation: 2018 Year in Review

The National Gaucher Foundation looks back on the accomplishments of 2018, made possible by the support and participation of the Gaucher disease community.

Topics: About the National Gaucher Foundation

2018 NGF Patient Symposium: Q&A

At a recent symposium on Gaucher disease, nationally and internationally renowned Gaucher disease experts answered a variety of questions about the condition. Topics touched on everything from advances in gene therapy to the role of diet in Gaucher disease treatment to whether people with Gaucher disease have certain biological advantages. Read the Gaucher disease Q&A… Read More »

Topics: About Gaucher Disease, About the National Gaucher Foundation

The History of Gaucher Disease

The history of a disease can be tricky to pinpoint. An individual disease makes people ill long before the disease itself has an identity or name. Archaeologists found evidence of cancer in ancient Egyptians, though cancer didn’t get its name until 1,000 years after the ancient Egyptians. When Was Gaucher Disease Discovered? So it’s probably… Read More »

Topics: About Gaucher Disease

[Webinar] Parenting Adolescents with Gaucher Disease

On October 8, the National Gaucher Foundation hosted a webinar featuring Laurie Bailey, Clinical Research Manager at Cincinnati Children’s Hospital. You can watch the recording below. Toolkit Presentation Slides Transitions Growing and Managing Your Own Healthcare: What Every Teen Living with an LSD Needs to Know to Manage Their Healthcare – Dawn Laney, MS American… Read More »

Topics: About Gaucher Disease, Living With Gaucher Disease

Meet Our Ambassadors

The National Gaucher Foundation just announced our first Ambassador cohort. Meet the elite group below. We asked…”What inspires you to live a better today?” Kelly Burns Rhode Island “Choosing what I love, and what inspires me to live a better today, is family. Family has been behind a lot of major changes recently in my… Read More »

Topics: Living With Gaucher Disease

Drug Pricing, a Complex Issue Affecting the Rare Disease Community

Orphan drugs are expensive, and recent changes to the Orphan Drug Act may up the price even more. Find out how to take action and make your voice heard.

Topics: Insurance, Living With Gaucher Disease

Precision Medicine and the Implications for Gaucher Disease (Podcast Recap)

Precision medicine could help enhance and direct treatment for Gaucher disease. But it might be challenging to obtain detailed genetic information from people living with Gaucher disease.

Topics: About Gaucher Disease

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