JAKUB’S STORY

I was born with spinal muscular atrophy, a rare genetic condition that affects my ability to walk and maintain muscle strength.

Living with a disability has taught me resilience, creativity and courage. Instead of letting limitations define me, I chose to turn them into motivation to act, to lead and to inspire change.

That is why, I founded Aiming for the Future – to support others, raise awareness, and show that a diagnosis is not the end of a dream.

Together, we can build a future where difference is strength and hope is contagious.

The ERN Overarching Youth Panel brings together young people with rare diseases from across Europe to make sure their voices are heard within the European Reference Networks. The panel allows young patients to share their experiences, especially around the move from children’s to adult healthcare, and to help improve how care is organised. Youth Panel members work together, take part in meetings and workshops, and contribute directly to ERN projects and recommendations. The goal is to ensure that healthcare for young people in Europe with rare diseases is more supportive, inclusive, and shaped by those with lived experience.

Young adult patients can join by contacting ern.rareliver@uke.de