Lauren Edwards, USA: “Gaucher has no single face, and our global community is stronger when we learn from one another.”
When I was invited to attend the 2023 Go with Gaucher Symposium in Istanbul, Türkiye (Turkey), I was honoured, but I had no idea just how much the experience would mean to me. I arrived not knowing what to expect and left with friendships that feel more like family.
For the first time since my diagnosis, I was surrounded by other young adults from around the world who understood what it means to live with Gaucher disease. Even though we came from different countries, cultures, and in some cases didn’t even speak the same language, our shared experiences united us instantly. I felt seen, understood, and supported in a way I never had before.
Beyond the relationships, the symposium was also educational. We learned about the latest Gaucher research, mental health, advocacy, and leadership, as well as how we can continue to strengthen our patient communities. I had already been involved in advocacy before attending—volunteering with Gaucher organisations in the US, writing about my own journey, and helping amplify the stories of other patients—but I left Go with Gaucher even more inspired and motivated to continue this work.
One of the things I value most about the symposium is that it reflects the true diversity of the Gaucher community. While Gaucher disease is often associated with the Ashkenazi Jewish population, Go with Gaucher brings together people from every corner of the world and every walk of life. It reminds us that Gaucher has no single face, and that our global community is stronger when we learn from one another.
I am incredibly grateful to the International Gaucher Alliance for investing in the next generation of patients and advocates through Go with Gaucher. Programmes like this do more than educate—they build confidence, foster leadership, and create lifelong connections that strengthen our global community. I hope this symposium continues for many years to come so that future generations of young people living with Gaucher can experience the same sense of belonging, empowerment, and hope that I did.
Excerpted from “Go with Gaucher: taking forward the next generation”
