Category: Living With Gaucher Disease

Bone Disease, An Often-Overlooked Complication of Gaucher Disease

The more we learn about Gaucher disease, the more we understand how it affects complex cellular interactions among various body systems. As familiarity with Gaucher disease grows, more people recognize the hallmark symptoms of this disorder, such as spleen and liver enlargement and problems with certain blood components. But difficult-to-treat bone disorders are also common… Read More »

[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 »

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 »

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.

[Podcast] Gaucher Disease and U.S. Health Insurance

This month’s premier podcast is focused on the basics of U.S. health insurance and how it affects Gaucher patients and their families. We spoke to Aviva Rosenberg, a healthcare attorney from Pittsburgh, Pennsylvania. She is passionate about educating people on genetic diseases and screening, as well as sharing her journey with Gaucher disease, and being… Read More »

[Video] Meet The Garay Family

The Garay family has three children: Diego, 9, Sienna, 5, and Annika, 3. Annika and Diego have Gaucher disease. This video shares their story.

Psychosocial Impacts of Living with Gaucher Disease

Doctors and scientists have already made tremendous progress in the diagnosis and treatment of rare diseases, including Gaucher disease. However, many patients and families still experience a significant psychosocial burden. Often, those living with the disease must become their own “disease experts” as they navigate the healthcare landscape, deal with significant financial challenges, and learn… Read More »

[Video] Meet Nate: Gaucher Disease Patient Journey

For 10 years, Nate struggled to receive a diagnosis for his excruciating bone pain. He was finally diagnosed with Gaucher disease and made a miraculous recovery.

Should your Medical History be in the International Gaucher Registry?

When it comes to improving Gaucher disease treatment, knowledge is power. The more data the medical community can gather on this rare condition, the better equipped they are to develop new ways of treating it. That’s where the International Collaborative Gaucher Group (ICGG) Gaucher Registry comes in. Launched in 1991, and directed by an international… Read More »

Meet Ted: Gaucher Disease Patient Journey

In 1963, Ted was diagnosed with Gaucher disease type 1 at five years old. Enzyme Replacement Therapy wasn’t FDA approved until 1991, so Ted spent many years living with this disease and without any treatment. He draws on his experiences to help patients, students and medical professionals see the positives in the worst life can offer…. Read More »

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