Gaucher Disease Awareness Month 2022 - National Gaucher Foundation

October is Gaucher Disease Awareness Month, and all month the National Gaucher Foundation will be sharing stories and updates centered around the Gaucher Community.

For the latest updates, follow NGF on social media:

Gaucher Journeys

10 Steps to Greater Gaucher Awareness

If you’re new to the Gaucher community, or just beginning your journey, you may feel overwhelmed – we understand completely.

Here are 10 steps you can take to get started:

Understand exactly what Gaucher disease is and its associated types: Type 1, Type 2 and Type 3.
Learn the symptoms of Gaucher disease, as well as related conditions.
If you or a family member may be at risk, find out about testing for Gaucher disease, including how it is diagnosed, who should get tested, and how the testing’s accuracy.
Read about Gaucher disease treatments: Enzyme Replacement Therapy (ERT) and Substrate Reduction Therapy (SRT).
Use the NGF’s Treatment Finder to find a Gaucher specialist by location, name, or specialty.
Paying for Gaucher disease treatment is a challenge for most families. Learn about Financial Support resources to help ease the burden.
Help build a Treatment Team for your Gaucher disease management and care, with support from Gaucher specialists, a primary care physician, and more.
Understand you’re not alone. Connect with other Gaucher patients and their families by watching and reading their Patient Journeys.
Connect with the talented professionals of the National Gaucher Foundation. Contact us and get the help you need as you go on this journey.
If you’re able, give back. Join the NGF’s Stepping Stones Sustainer program or make a donation to provide needed resources to the patient community.

The Latest on Social

The Emory Genetics Clinic and Infusion Center in A

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Genetic testing, including ancestry testing, has i

Since Gaucher disease affects the liver, does alco $Since Gaucher disease affects the liver, does alcohol affect patients differently? While there have not been any direct studies of alcohol use and Gaucher disease, you may want to limit your consumption. Excess alcohol also increases fracture risk in patients with osteopenia (bone loss) or osteoporosis. If you experience liver complications related to Gaucher disease, experts say you should restrict or eliminate alcohol use entirely. For patients with a more mild form of the disease, the occasional drink is likely OK. Ultimately, this is a question for your Gaucher specialist. #gaucherdisease #gaucher #gaucherawareness #nationalgaucherfoundation #gaucherfoundation #rarediseases #rarediseaseawareness$

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Newly Published Book Spotlights Gaucher

A new book by author Debra Green, The Convention of Wives, features a main character who has Gaucher disease.

The novel is “is a story about the ever-evolving messiness of friendship and marriage, and the wonder of survival.”

When Dina and Julia meet at a surgical convention, they bond over frustrations with their husbands’ demanding schedules. But geography, time, and growing families make maintaining their friendship difficult and their relationship eventually falls apart. One of them is left to wonder why; the other has a secret. But neither of them knows that decisions made by family members decades earlier have set them on a collision course.

To find out more and purchase The Convention of Wives, visit Amazon.com.

Make Your Impact Felt

Your donation to the National Gaucher Foundation helps to increase awareness of Gaucher disease and provides needed resources to the patient community.

By making a one-time gift or joining the Stepping Stones Monthly Sustainer program, you can make an ongoing impact among those living with Gaucher disease across the country.

Give today and help make an impact. 💙

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Gaucher Disease Awareness Month