Go with Gaucher: taking forward the next generation
The International Gaucher Alliance is prioritising the next generation of advocates by providing a safe space for confidence-building, forging friendships and creating leadership opportunities—all with the reassurance that ‘they were not alone’
Written by Vesna Aleksovska, developmental programme coordinator, Tanya Collin-Histed, CEO, Saurabh Kapse, volunteer, GWG participant and Paulina Peña Aragón, board director,
International Gaucher Alliance (IGA)
Every lasting movement begins with one person who sees a need that others have yet to recognise.
For the International Gaucher Alliance, that person was Anne-Grethe Lauridsen of Denmark. A passionate advocate and IGA Board member, Anne-Grethe believed that the future of the Gaucher community depended on investing in its young people. She knew they needed more than medical knowledge—they needed confidence, friendships, leadership opportunities and the reassurance that they were not alone.
In 2012, her vision became Go with Gaucher (GWG). The name reflects a simple but powerful truth: Gaucher disease goes wherever you go—but it should never stop you from moving forward.
What began as a gathering of young adults from IGA member organisations has become one of the IGA's most valued long-term commitments. Today, Go with Gaucher is where lifelong friendships are formed, future advocates emerge and tomorrow's leaders begin their journey.
Living with Gaucher disease as a young person brings its own set of questions alongside the usual challenges of education, work, independence and family. How do you explain a rare disease to friends, employers or partners? How do you navigate the emotional impact of a lifelong condition? Go with Gaucher was created because young people told us they wanted to explore these questions with peers who understood them without needing to explain.
Each symposium combines scientific updates with practical workshops on leadership, advocacy, communications and event planning, alongside honest discussions about the realities of living with Gaucher disease. Attendance is by invitation through IGA member organisations.
The real impact of Go with Gaucher cannot be measured by the presentations delivered or the workshops attended. It is measured by the lives it changes. Many former participants have gone on to become leaders within their national organisations and the International Gaucher Alliance itself. Their stories speak far more powerfully than we ever could.
Since the first Go with Gaucher event in 2012, we have held four similar gatherings. Among the participants, some now serve on the IGA board, others have acted as regional managers, and some have volunteered for specific projects. Currently, a number of them make up what we call the Youth Community and are working on a children's book to explain what it is like to live with Gaucher disease around the world. Language was never a barrier, even with participants from more than thirty countries. Attendees also set up a WhatsApp group to stay in touch, offer advice and exchange experiences.
A message from the participants
Saurabh Kapse, India: "GWG is much more than an event—it empowers young people living with Gaucher disease to find their voice, build lifelong connections and become the next generation of patient leaders."
I was invited to attend Go With Gaucher (GWG) in Istanbul, Turkiye (Turkey), on 10th November 2023. Attending GWG was a turning point in my journey. It gave me a deeper understanding of Gaucher disease, including the latest advances in treatment and research, therapy switching, nutrition, mental health and other important aspects of living with the condition.
Before GWG, I viewed Gaucher mainly through my own personal experience. GWG broadened my perspective, introduced me to the strength of the global Gaucher community, and reinforced the importance of patient advocacy. Meeting young people from around the world who truly understood life with Gaucher made me realise that, despite our different backgrounds and cultures, we share many of the same challenges, can learn from one another, and are part of one global family.
GWG gave me the confidence, knowledge, and leadership skills to become a stronger advocate for the Gaucher community in India. Although I had already been involved in advocacy and volunteering within the Gaucher community in India before attending GWG, the experience inspired me to take on greater leadership responsibilities. It ultimately led me to become a member of the IGA Youth Council, where I work alongside young communities from around the world to improve the lives of people living with Gaucher disease.
For me, GWG is much more than an event—it empowers young people living with Gaucher disease to find their voice, build lifelong connections, and become the next generation of patient leaders.
Thank you, IGA, for organising the "Go with Gaucher" event. It gave me a wonderful opportunity to learn more about Gaucher disease and connect with people from around the world.
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.
Aarón Elías Perón, Argentina: "It isn't the end of the road, but rather an opportunity to embark on a new beginning."
Hi there! I'm Aarón Elías Perón; I live in Argentina and am 25 years old. I wanted to share a bit about my experience at the "Go with Gaucher" event, organised by the IGA (International Gaucher Alliance) in Istanbul, Turkey, on November 10, 2023. It was an extraordinary few days where I encountered various cases and ways of living with Gaucher disease, met wonderful people, and heard inspiring stories of resilience.
It was a unique and unexpected experience for me, but I am grateful to the IGA for giving me a chance to be part of the event and represent my country.
Being able to connect with specialists and share my story with representatives from the countries present was truly enriching. It was an experience that opened my mind and gave me a new perspective; I realised that while we don't all go through the same thing—and everyone has their own personal struggle—what unites us is Gaucher disease and the desire to show those facing it that it is possible to move forward and improve one's quality of life if you set your mind to it. It isn't the end of the road, but rather an opportunity to embark on a new beginning...
Paulina Peña Aragón, Mexico ("Pali"): "We were born once, and reborn when we received our enzyme replacement therapy for the first time."
On November 16, 17, and 18, 2012, the IGA invited a group of young patients with Gaucher disease—drawn from various member associations—to a seminar. There, everyone had the valuable opportunity to meet one another, exchange ideas, gather information and share common questions and thoughts.
Personally, the experience was overwhelming in the best possible way. Being with so many people like me—my age, sharing the same questions and concerns—showed me that I am not alone. Even though my disease is rare, some people understand me perfectly. After all, it isn't easy explaining the pain of a bone crisis to someone who doesn't have Gaucher.
Nothing about living with a rare disease is easy, yet it is our reality. At the same time, we want to experience the same things as other young people our age: living a normal life, studying, partying, falling in love, having a child.
At "Go with Gaucher," there was a wealth of opinions, ideas, and concerns, yet all were directed toward a single shared aspiration: to live. Not everyone understands the value we place on life, because we were born once and reborn when we received our enzyme replacement therapy for the first time; and although we know it isn't easy, we—the young people with Gaucher disease—live life to the fullest.
A long time has passed since that meeting, and ever since then, I have been involved in the work of the IGA—first as a volunteer and later as a board member. I do not believe my commitment would be as strong as it is had that initial "Go with Gaucher" moment not touched my life so deeply.
Vesna Aleksovska, North Macedonia: "I went from asking for help to supporting others who need help."
Go with Gaucher was created by Anne-Grethe Lauridsen, an amazing woman who became my role model and a guide to the Gaucher community. On November 16, 17, and 18, 2012, I attended the first meeting of young Gaucher patients in Frankfurt, Germany. Finally, I felt like I belonged; I had a new family, and it was so inspiring.
With this youth meeting, my life as a patient and a patient advocate got a new direction. I went from asking for help to supporting others who need help. The future was not just about having a normal life anymore; it was about building an extraordinary life.
I became a board director in the IGA in my twenties, then a vice-chair, a chair, and now I am leading the IGA Developmental Programme, reaching out to patients and doctors in countries where we do not have a member organisation.
I also helped build a national collaboration in my country that led the government to establish a rare disease registry and secure treatment coverage for patients.
My story changed because of the Go with Gaucher meeting. I would never change a thing.
Taking forward the next generation
More than a decade after the first Go with Gaucher meeting, Anne-Grethe's vision continues to live on.
Many of those who first attended as young participants have gone on to become volunteers, national leaders, members of the IGA Youth Council, Board Directors and international advocates. They are mentoring others, influencing policy and improving the lives of people living with Gaucher disease around the world.
That is the true legacy of Go with Gaucher. It is not measured by the number of meetings held but by the confidence it has inspired, the friendships it has created and the leaders it has helped shape. Every generation of volunteers has a responsibility to leave the Gaucher community stronger than they found it.
You do not choose to live with a rare disease, but you can choose who walks alongside you while you do. And when you come to IGA, you become part of a global family.
Investing in the youth community is not a side project for the IGA—it is the foundation of its future.
An organisation built on patient leadership can only remain strong if it keeps renewing that leadership and Go with Gaucher is where this renewal begins. The young people who pass through this programme do not simply benefit from the IGA; in time, they carry it forward, bringing fresh energy, new ideas and a wider reach into communities the IGA have not yet touched.
Other rare disease organisations, whatever their size or resources, would do well to take note: growth and continuity depend on the young people willing to take up the work, and that willingness has to be built deliberately, not left to chance. Go with Gaucher is proof that it can be done, and proof of why it must continue.
To learn more about Gaucher disease, please visit: gaucheralliance.org
To join the Go with Gaucher movement, visit: gaucheralliance.org/go-with-gaucher
