Connecting young adults. Building confidence. Shaping the future.
Meet other young people living with Gaucher disease from around the world.
Learn more about Gaucher disease, treatment and current research.
Exchange experiences and learn from one another.
Explore advocacy and patient leadership opportunities.
Develop practical skills for life, work and advocacy.
Build friendships and international connections.
Go With Gaucher began in 2012, with the first meeting taking place in Frankfurt, Germany. Since then, the programme has brought together young adults living with Gaucher disease from different parts of the world.
The fourth Go With Gaucher meeting took place in Istanbul, Türkiye, in 2023, with more than 15 young adults from Europe, the Americas and Asia.
Read more about the story behind Go With Gaucher in the RARE Youth Revolution article.
The programme combines different types of learning and discussion, including:
Educational sessions with experts covering developments in Gaucher disease, treatment and research.
Workshops on topics such as communication, public relations, event planning and advocacy.
Peer sessions provide space to discuss the realities of living with Gaucher disease and the issues that matter to young adults.
Previous programmes have included sessions on mental health, nutrition, pregnancy, treatment changes and other topics relevant to young adults.
Go With Gaucher creates opportunities for young adults to develop their knowledge, confidence and connections and take an active role in patient organisations and advocacy.
Some Go with Gaucher participants have gone on to take on leadership roles within the Gaucher community, including serving on the IGA Board. Their journeys demonstrate how the programme can help nurture the next generation of patient advocates and leaders.
Staying connected beyond the symposium
Following the 2023 Go With Gaucher meeting, the IGA developed a Youth Community bringing together young people with Gaucher disease who share an interest in connecting, learning and supporting one another.
In 2025, the Youth Community contributed to the IGA’s Red Flags awareness activities and became involved in the development of a book for children and young people living with Gaucher disease.
Go With Gaucher is about more than a single meeting. It’s about helping young adults build connections, gain confidence, share knowledge and find their place within the international Gaucher community.
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