Get Involved!
Raising awareness is a grassroots effort, and the more people get involved, the louder and stronger our voice is to make positive change for Gaucher patients and families. Join us in being part of the solution to create better lives for those with Gaucher disease.
Starting on October 1, 2025, International Gaucher Awareness Day, we will be kicking off Gaucher Awareness Month with several ways for you to get involved!
A zine is a small, self-published booklet that’s used to share personal stories, artwork, opinions, or niche topics — a creative, DIY-style publication that gives people a platform to express themselves. Zines can be about anything—ours will be related to Gaucher (of course!) —and are meant to be shared, swapped, and celebrated. You can draw, collage, paint… whichever medium speaks to you the most. Join us in raising awareness of Gaucher disease for Gaucher Disease Awareness Month, and celebrating the creativity of our community.
Zines will be collected and celebrated at our next in-person conference.
Join us on October 21st and November 3rd for virtual open studio hours—an opportunity to gather inspiration, ask questions, and enjoy some community crafting time.
Our November 3rd Session will be guided by Ted Meyer, an internationally recognized artist, curator, writer, and patient advocate in our Gaucher community, who will share insights as we collaboratively work on our individual zines.
Check back for registration information!
As part of the project, we’ll be hosting a contest with categories for different age groups. Winning zines in each category will earn a prize! Voting will begin in January across all of our social media platforms.
Age Group Categories:
Why do we raise awareness?
Raising awareness of Gaucher disease helps to improve early diagnosis, which can save lives. It informs policy makers of the personal and financial struggles faced by rare disease families and encourages funding of necessary research to bring new treatments to market. It fights discrimination against people with rare diseases and special needs, and it reminds those of us who are affected that by being part of a greater community we are not alone or isolated. We have somewhere to turn if we need help.
How is the Gaucher Community Alliance raising awareness year-round?
We believe in the privilege of having a voice and the power of grassroots efforts to mobilize and strengthen that voice. So we rely on our Gaucher community – including patients, caregivers and families; medical experts and researchers; and the pharmaceutical and biotechnology industry – to help us raise awareness. It is a large effort, but if everyone participates, we can raise the profile of this disease so that we are recognized. Recognition will bring us more of the things we need to help us receive treatment, manage our disease and live longer, fuller lives.
