Real Stories. Real Experiences.

Every person’s experience with Gaucher disease is different.

Read and watch personal stories from people living with Gaucher disease, parents,
caregivers and advocates from around the world.

Stories from the Gaucher Community

A collection of personal experiences from people and families affected by Gaucher disease.

Written Story

Finding Answers

After years of unexplained fatigue and joint pain, Michael shares the profound sense of relief that came with his Gaucher diagnosis and how targeted support turned things around.

Video Story

Living Life to the Full

Watch Elena explain how modern enzyme replacement therapy helped her pursue her passion for mountain climbing and active outdoor life.

Written Story

Our Family Journey

A poignant account from parents David and Clara on navigating their young son's diagnosis with early Gaucher type 3 and building a support network.

Video Story

Advocating for Change

Meet Marcus, an IGA regional advocate, as he discusses his work in expanding diagnosis access and treatment networks in Latin America.

Written Story

Strength in Community

How joining local support groups transformed a frightening diagnosis into a shared path of resilience, learning, and advocacy.

Video Story

Looking to the Future

Zoe talks about clinical trial milestones and her hope for next-generation treatment profiles offering convenient, less-invasive options.

Connecting Through Shared Experiences

Connecting with people who have experienced Gaucher disease can provide reassurance, perspective and a sense of community

Your Experience Could Help Someone Else

If you are living with Gaucher disease or caring for someone who is, you may wish to share your experience with the wider Gaucher community.

Every Story Matters

Every experience adds to our understanding of the Gaucher community and can offer a valuable perspective to someone else.