Gaucher Community Alliance

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Earlier this week, the Gaucher Community Alliance posed the question, "What word comes to mind when you hear Gaucher dis...
10/08/2026

Earlier this week, the Gaucher Community Alliance posed the question, "What word comes to mind when you hear Gaucher disease?". Even with having a shared diagnosis, each person represents an individual experience and an individual story.

During the 2026 GCA Patient & Family Conference, in one of our many engaging sessions, "How to Tell Your Rare Disease Story", we will discuss the many ways that we can represent our journeys with Gaucher disease in order to help raise awareness. We are looking forward to seeing you in Phoenix in a few days!

If you haven't already participated in this week's Gaucher Awareness Month word cloud, you can do so here: https://app.sli.do/event/t1UjvH8g1A15zba7z5GwbC

Attention Young Researchers! -
10/08/2026

Attention Young Researchers! -

Announcement: Pennsylvania House Passes Gaucher Disease Legislation, 195 to 7The Gaucher Community Alliance is proud to ...
10/06/2026

Announcement: Pennsylvania House Passes Gaucher Disease Legislation, 195 to 7

The Gaucher Community Alliance is proud to share that HB 1652 has passed the Pennsylvania House of Representatives with overwhelming support. Introduced by Rep. Abigail Salisbury, HB 1652 would add Gaucher disease to Pennsylvania's newborn screening program, so families learn their child's diagnosis from birth.

This milestone is a direct result of our PA advocates, who traveled to Harrisburg to share their stories and urge lawmakers to act. We extend our sincere gratitude to Rep. Abigail Salisbury and Rep. Dan Frankel for their steadfast support of the Pennsylvania Gaucher community.

The bill now moves to the Senate, which has only eight session days remaining. While the timeline is tight, every voice matters.

Call to action: If you are a Pennsylvania resident, please contact your state senator TODAY by phone or email and urge them to pass SB 1424/HB 1652 before the session concludes.

Thank you for standing with the Gaucher community.

Week 1 of Gaucher Awareness Month: What word comes to mind when you hear Gaucher disease?This October, the Gaucher Commu...
10/05/2026

Week 1 of Gaucher Awareness Month: What word comes to mind when you hear Gaucher disease?

This October, the Gaucher Community Alliance is turning to you, our patient and family community, to help identify the many unmet needs you deal with every day. Each week, we'll share a word cloud prompt to gather your input.

Add your word to our interactive word cloud here: https://app.sli.do/event/t1UjvH8g1A15zba7z5GwbC. There are no wrong answers!

Raising awareness for Gaucher disease educates the public and the medical community. It helps doctors recognize symptoms...
10/01/2026

Raising awareness for Gaucher disease educates the public and the medical community. It helps doctors recognize symptoms to shorten the diagnostic journey, improves quality of life for our community, accelerates research and funding, and connects our families to one another.

This year, the Gaucher Community Alliance is turning to you, our patient and family community, to help identify the many unmet needs you deal with every day. Throughout October, Gaucher Awareness Month, look for our weekly word cloud posts and share your input. Once the month ends, we'll use what we've learned to organize resources that meet these needs.

Stay tuned for ways to get involved!

One of the many sessions featured at this year's Gaucher Community Patient & Family Conference: a guided Reiki experienc...
09/23/2026

One of the many sessions featured at this year's Gaucher Community Patient & Family Conference: a guided Reiki experience with Stefanie Rubin, offering attendees a moment of relaxation between conference workshops and activities.

Stefanie began her own healing journey in 2021, discovering meditation and Reiki along the way — a path that inspired her to become certified in both Reiki and sound healing. In July 2023, mid-training, she was diagnosed with Gaucher Disease Type 1 — an experience that deepened her commitment to supporting patients and caregivers.

She lives in Manhattan and spends her free time at the beach, baking, knitting, and practicing yoga.

Register here: https://gauchercommunity.app.neoncrm.com/nx/portal/neonevents/events?path=%2Fportal%2Fevents%2F45399

Celebrating more moments from the Sanofi 2026 TORCH Awards! GCA is so grateful to Sanofi for their recognition and we lo...
09/21/2026

Celebrating more moments from the Sanofi 2026 TORCH Awards! GCA is so grateful to Sanofi for their recognition and we look forward to Cyndi and Aviva's continued leadership within our community.

Reminder! Applications are open and the deadline to apply for the Young Researcher Scholarship is October 31st. By suppo...
09/17/2026

Reminder! Applications are open and the deadline to apply for the Young Researcher Scholarship is October 31st.

By supporting young researchers and students, this program will honor the essence of Dr. Ginns’ work and encourage research and efforts to provide better futures for Gaucher patients.

This scholarship aims to encourage early career researchers, undergraduate and graduate students who are intending to pursue research or a medical career in the area of lysosomal storage diseases. The grant of $4,000 will cover registration and travel to attend either the WORLDSymposium, SSIEM, or an alternative conference approved by the GCA Scholarship Committee.

Learn more and apply here: https://www.gauchercommunity.org/services/young-researcher-scholarship/

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+14122199188

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