Goal of Gaucher Awareness Month 2025? A shorter diagnostic journey.
Advocy groups seek to improve understanding with social media campaigns
International Gaucher’s Day on Oct. 1 kicks off Gaucher’s Awareness Month, with patients, families, advocates, and medical professionals coming together to increase understanding and support for those living with Gaucher disease.
The 2025 campaign theme, sponsored by the International Gaucher Alliance (IGA), is “See the Signs, Shorten the Diagnostic Journey” — with a goal of better diagnosing the rare genetic disorder.
Gaucher, estimated to occur in 1.5 of every 100,000 live births, can affect multiple parts of the body, causing issues such as enlarged organs, blood disorders, bone abnormalities, and, in some cases, neurological complications. There are three main types of Gaucher, distinguished based on the presence, severity, and timing of neurological issues. The condition can affect people of all demographic backgrounds, but it’s particularly common in those of Ashkenazi Jewish descent, where about 1 of 450 live births are affected.
The IGA this year is sponsoring a campaign that will run throughout the month of October. The initiative spotlights what the association says is an urgent need to recognize the early warning signs of Gaucher, reduce the burden of diagnostic delays, and improve access to care.
“International Gaucher Day 2025 is fast approaching,” the advocacy group stated in its last quarterly newsletter in July. “This is such an important day on the IGA’s calender and we want as many of you involved as possible.”
Worldwide kickoff is International Gaucher Day on Oct. 1
An awareness month calendar will launch on Oct. 1, with communications daily throughout the month on IGA’s social media channels, mainly Facebook and Instagram.
Weekly topics will highlight symptoms that may signal Gaucher, the consequences of a delayed diagnosis, how to access the right care, and the importance of advocacy and action. Offerings will show cases of successful gene therapies for the condition, and the role of the IGA in connecting and empowering the Gaucher community.
“We have prepared 31 [pieces],” Andrė Balžekienė, director of the IGA, wrote in an email to Gaucher Disease News, noting there will be a variety of content, “from awareness posts of disease early signs (so-called red flags) to patient stories, from patient advocacy success stories to challenges of the unmet needs, [to] information on gene therapy and many more.”
Meanwhile, the Gaucher Community Alliance (GCA) will be launching its own 2025 initiative, the GCA Zine Project, which aims to engage the Gaucher community and celebrate its members’ creativity.
Zines are small, self-published booklets used to share personal stories, artwork, opinions, or other information on niche topics. The creative, do-it-yourself publications are designed to give people a platform to express themselves.
“Raising awareness of Gaucher disease helps to improve early diagnosis, which can save lives,” Cyndi Frank, cofounder and copresident of the GCA in an email to Gaucher Disease News. “It informs policymakers of the personal and financial struggles faced by rare disease families and encourages funding of necessary research to bring new treatments to market.”
Participants who sign up before the end of the year will receive starter kits and create zines reflecting their experiences, stories, and perspectives around Gaucher. The final zines will be collected, displayed digitally on GCA platforms, and celebrated at the next in-person conference.
To participate in the GCA Zine Competition, entries must be submitted by Dec 31. Patients can also share their stories on the organization’s webpage.
Being rare, we need to stand together to have a larger voice that can help make change.
For the community’s artists, virtual open studio hours — an opportunity to gather inspiration, ask questions, and participate in some community crafting time — are being offered on Oct. 21 and Nov 3.
The awareness website will provide updates on the virtual studio hours throughout the month, so advocates are encouraged to check GCA’s social media.
Volunteers are being sought to join various committees, such as fundraising, volunteering, and youth advisory. Everyone in the community is encouraged to join the mailing list.
“Being rare, we need to stand together to have a larger voice that can help make change,” Frank wrote. “The Gaucher Community Alliance is a vehicle to help that connection, but it is the patients, families, and caregivers who are doing the hard work.”
Foundation supports patients through Stepping Stone Sustainer program
The National Gaucher Foundation, an independent nonprofit dedicated to serving U.S. patients with Gaucher and their families, is also marking awareness month. The foundation provides financial support, educational programming, patient services, and collaboration with medical professionals — and it’s encouraging the community to support its efforts.
NGF provides information to the Gaucher community under the knowledge center and treatment finder tabs on the website.
Advocates can make a difference in the lives of patients and their families by making a one-time gift or joining the Stepping Stones Monthly Sustainer program, designed to support NGF’s patient advocacy initiatives.
NGF also offers merchandise, including T-shirts, sweatshirts, water bottles, mugs, throw blankets, and more.
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