Gaucher Community Alliance

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It's not too late to join this year's Washington DC Advocacy Trip: Women on the Hill! 🗓 June 24–June 26📍 Washington, DCT...
05/15/2026

It's not too late to join this year's Washington DC Advocacy Trip: Women on the Hill!

🗓 June 24–June 26
đź“Ť Washington, DC

This trip is designed to encourage advocacy within the Gaucher community, support meaningful steps toward policy changes that impact the Gaucher and rare disease communities, and create a women’s cohort to discuss issues unique to our health.

Register here: https://forms.gle/ECymWuMkk4uwuJKP8

Webinar: Updates from the Venglustat Clinical Trial in Type 3 GD Patients🗓 Thursday, June 18th⏰ 7:00 PM ET / 4:00 PM PTP...
05/12/2026

Webinar: Updates from the Venglustat Clinical Trial in Type 3 GD Patients

đź—“ Thursday, June 18th
⏰ 7:00 PM ET / 4:00 PM PT

Presented by:
Pramod Mistry, MBBS, PhD, MA, MD

Professor of Medicine (Digestive Diseases) and of Pediatrics (Gastroenterology)
Professor of Cellular & Molecular Physiology
Director of Yale Lysosomal Disease Center and Gaucher Disease Treatment Center

Register here: https://gauchercommunity.app.neoncrm.com/nx/portal/neonevents/events?path=%2Fportal%2Fevents%2F45338

This educational program is sponsored by Sanofi. Venglustat is an investigational treatment and has not been approved by the FDA or any other regulatory authority. The information presented is not intended as medical advice. Please consult your physician regarding your individual medical condition and treatment options.

*Closed caption translation services available.

Aviva had a lovely week attending IWGGD Symposium in Trieste, Italy. (International Working Group on Gaucher Disease). E...
05/05/2026

Aviva had a lovely week attending IWGGD Symposium in Trieste, Italy. (International Working Group on Gaucher Disease). Experts from around the world presented on topics from Gaucher diagnosis in Africa to skin manifestations to Gcase modifiers. Aviva presented a poster on newborn screening challenges in the United States. It was an inspiring week meeting incredible patients from around the world.

Gaucher Women on the Hill -
05/04/2026

Gaucher Women on the Hill -

The Gaucher Community Alliance wrapped up a successful day in Albany, advocating for the inclusion of Gaucher disease on...
04/30/2026

The Gaucher Community Alliance wrapped up a successful day in Albany, advocating for the inclusion of Gaucher disease on New York State’s newborn screening panel. We urged our representatives to advance bills S08545 and A09211 and highlighted the importance of newborn screening for individuals affected by Gaucher disease.

A very special thank you to everyone who joined us! Stay tuned to see more photos and to learn about ways to get involved.

Wisconsin is Official!Based on the unanimous decision of the Wisconsin Newborn Advisory Committee, Kristen Johnson, Secr...
04/29/2026

Wisconsin is Official!

Based on the unanimous decision of the Wisconsin Newborn Advisory Committee, Kristen Johnson, Secretary of the Wisconsin Department of Health, approved the addition of Gaucher to the Wisconsin newborn screening panel. Special thank you to our medical champions, Dr. Michael Finkel and Dr. Sheldon Garrison for the efforts in support of our community.

The Phase 3 GALILEO gene therapy clinical trial from Spur Therapeutics is now open in the U.S.Current study sites includ...
04/23/2026

The Phase 3 GALILEO gene therapy clinical trial from Spur Therapeutics is now open in the U.S.

Current study sites include:
• Duke University (Durham, NC)
• Liver Research & Diagnostics Treatment Center (Virginia)
• University of Texas Southwestern (Dallas, TX)

With additional locations opening soon!

If you’re interested in learning more or finding out if you may qualify, visit www.gauchertrials.com

Registration is now open for the Women on the Hill Advocacy Trip 2026!Ladies, join us in Washington, DC! We welcome all ...
04/22/2026

Registration is now open for the Women on the Hill Advocacy Trip 2026!

Ladies, join us in Washington, DC! We welcome all women and femme individuals who have been diagnosed with Gaucher disease, as well as their women-identifying friends, families, and caregivers. Attendees under 18 must be accompanied by a parent or guardian.

This trip is designed to encourage advocacy within the Gaucher community, support meaningful steps toward policy changes that impact the Gaucher and rare disease communities, and create a women’s cohort to discuss issues unique to our health.

🗓 June 24–June 26
đź“Ť Washington, DC

đź”— Learn more here: https://www.gauchercommunity.org/get-involved/events/women-on-the-hill-advocacy-trip/

Calling all artists! This July, SketchNF will be opening a rare disease art show at the Positive Exposure Gallery (openi...
04/21/2026

Calling all artists!

This July, SketchNF will be opening a rare disease art show at the Positive Exposure Gallery (opening July 7), and they’re looking for submissions from across the rare disease community.

The show is open to anyone living with a rare disease—any condition, any age. Patients and families are invited to submit original artwork alongside their personal story. Each piece in the exhibit will be created by someone with lived experience, helping to build a space where rare disease families can see themselves reflected in one another.

Submissions are also open to advocates and providers—including physicians, nurses, and genetic counselors—who want to share their perspective through art.

How to participate:
• First, fill out the interest form: https://jh.qualtrics.com/jfe/form/SV_cMyNq6mv0Kbvp78?Q_CHL=qz
• Submit an original piece of artwork (any medium)
• Include a short personal story to accompany your work
• Submit your materials via email to [email protected]

Address

Pittsburgh, PA

Telephone

+14122199188

Website

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