Support and resources for people living with Gaucher disease
Gaucher disease may be rare, but there is a community of people and wealth of resources available to help you better understand the condition.
By learning more about the disease and its effects, you can become a stronger advocate for your health—or the health of someone close to you.
Patient advocacy groups for Gaucher disease
The medical community’s understanding of rare and genetic diseases is always evolving. But making sense of the latest discoveries or recently updated information can be tricky when dealing with complex conditions.1
Patient advocacy groups (PAGs) are organizations that track the latest news on various disease states and explain the findings in simple terms for patients and caregivers.1
There are several PAGs supporting the Gaucher disease community. Visit their websites to learn more about them and the services they offer.
This listing is provided for reference only and does not constitute an endorsement by Sanofi of any particular organization or its programming. All other trademarks are the property of their respective owners.
National Gaucher Foundation (NGF)
An independent nonprofit dedicated to serving U.S. patients with Gaucher disease and their families through financial support, educational programming, patient services, and collaboration with medical professionals.
Gaucher Community Alliance (GCA)
A non-profit organization to support patients with Gaucher disease and their families through peer-to-peer support and education, advocacy, patient and family resources, and networking opportunities.
Resources to support wellbeing in Gaucher disease patients and caregivers
The following materials offer insight and general information that could help support the wellbeing of people living with Gaucher disease and those close to them.
Understanding Gaucher disease
An introductory guide to Gaucher disease for patients and families
Lab locator for patients with Gaucher disease
A guide for you and your healthcare team containing information on Gaucher disease and a list of labs in the United States that perform diagnostic testing.
Jewish community patient brochure
This brochure can teach you more about genetic conditions like Gaucher disease that can affect Jewish communities.
Gaucher patient schedule of assessments
A guide to help you and your healthcare provider monitor your symptoms and track disease changes over time.
The importance of well-being
Hear why it’s vital for caregivers to find time for themselves
Getting Your ERT Infusion
The importance of well-being
Forming a support circle
Parents of children with chronic disease provide a lot of care. Having reliable support for yourself is important. This guide could help you build a support network.
Coping after a diagnosis
A conversation about what can happen after a chronic disease diagnosis
Getting Your ERT Infusion
Coping after a diagnosis
Coping strategies for caregivers
Self-care tips for caregivers of patients with chronic disease
Living with Gaucher disease
Video: Learn the story of Alex's journey with Gaucher disease type 1
Learn about support and resources available
If you or someone close to you is living with Gaucher disease and you’re looking for resources or support, a Case Manager from our team is to speak with you Monday through Friday, 8AM-6PM EST.
Call 1-800-745-4447 (for English, press 3; para español, oprima 7) or email info@CareConnectPSS.com.
References
1 Patterson AM, O'Boyle M, VanNoy GE, Dies KA. Emerging roles and opportunities for rare disease patient advocacy groups. Ther Adv Rare Dis. Jan-Dec 2023;4:26330040231164425. doi:10.1177/26330040231164425
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