2026年提升青年声音：塑造罕见病社区的未来

Living with a rare disease means navigating stigma, isolation, and uncertainty. For young people, these challenges are compounded by the pressures of growing up, starting university, entering the workforce, and building relationships, alongside shaping an independent identity.

Around 70% of genetic rare diseases present in childhood.This means young people are not only impacted early in life, but often develop deep lived experience, insight, and expertise long before they are invited into decision-making spaces.

Yet their voices are essential to the decision-making process.If the rare disease community is to build a more equitable and sustainable future, it must actively listen to, include, and empower youth.

It was this feedback that led Rare Disease Day to place young people at the centre of our first ever in-person event.

Raising Youth Voices, held in Barcelona, was designed to showcase, support and elevate young advocates from across the world, sending a clear message: young people are not only the future of the rare disease community, they are already leading it.

Behind the scenes, Raising Youth Voices 2026 was the result of close collaboration between Rare Disease Day, the National Organization for Rare Disorders (NORD), and Rare Diseases International (RDI), with the support of Fondation Ipsen under the aegis of Fondation de France.

To ensure as much global representation as possible, a call for nominations was launched across social media platforms to find a representative from each of the UN’s geoscheme regions.

Over fifty young people applied, and while the final selection was difficult, the following advocates were selected to represent their regions: Liam (North America – USA), Maksym (Europe – Ukraine), Su (Asia – China), Pablo (South America – Colombia), Vincent (Africa – Zimbabwe) and Stephanie (Oceania – Australia).

Each representative was chosen based on their leadership, advocacy experience, communication skills, and commitment to advancing the rare disease agenda through innovative, local Rare Disease Day projects.

Together, they reflected a wide range of ages (between 18 and 30), cultural contexts and advocacy approaches which promised to create a discussion of great depth with a diversity of insights.

However, representing the full diversity of the young, global rare disease population within a single panel is impossible, a limitation that was acknowledged from the outset.

One particularly stark example was Maksym’s inability to attend the event in person after his father and caregiver was unexpectedly refused exit at the Ukrainian border.

His absence served as a reminder of the external barriers many advocates face, often beyond their control, when attempting to be heard.

Hosted at the former hospital, Recinte Modernista de Sant Pau in Barcelona, the free event attracted strong interest from across Europe and beyond.

With over 90 registrations, the event drew a diverse audience consisting of medical students, patient organisation leaders, researchers, and industry representatives.

The panel, moderated by Global Rare Disease Day Lead Rhiannon Walls, started with presentations and went into a discussion that highlighted both the shared issues and the strength found in the diversity of people’s approaches to tackling these issues.

Su (25) highlighted the critical role of social media in China for people living with spinal muscular atrophy (SMA), where physical barriers and stigma can limit opportunities to connect with others.

Digital platforms, she explained, have become vital spaces for community that “can change how society treats people like us.” However, representatives at both ends of the panel’s age range also highlighted the darker side of social media.

Liam (21) spoke about the “stigma around sharing your rare disease” in public forums.

Stephanie (30) shared of finding a balance between sharing her daughter Mila’s diagnosis with infantile neuroaxonal dystrophy (INAD) in their advocacy and her right to privacy, describing the constant pressure to share things beyond the boundaries of what her family would be comfortable with.

Both she and Liam also stressed the importance of showing through social media that people are more than their rare disease.Mila is “a person, and she has a right to dignity”.

While social media is crucial to the lives of youth today, acting as a form of democratisation in which everyone has the chance to have a voice, it also comes with risks and challenges, Liam admits, “the internet can be a cruel place”.

Liam went on to discuss the strengths of the healthcare and advocacy infrastructure in the United States, while reminding the global audience how fragile access to care and treatments can be without health insurance.

While contrasting in background, Pablo (30), his South American counterpart, also brought up the element of ‘luck’, reflecting on his experience.

Growing up in Colombia, where discrimination and social hierarchies determine access to diagnosis and care, he spoke candidly about how early access to treatment shaped his own life, while recognising that many others with the same condition do not have the same luck.

He pointed towards the need for young people to speak up for what matters to them in their specific context to achieve equity, stating that:

“Great things have never been the work of just one person. Without the voices of the people here on stage, and the organisations who supported us, this work simply wouldn’t exist.”

PabloProviding a healthcare perspective, medical student Vincent spoke passionately about his work to promote a ‘Rare Aware’ mindset among medical professionals in Zimbabwe, helping to shape discussions linked to the country’s upcoming National Health Plan.

He explained that, due to the cultural stigmatisation of rare diseases, his medical curriculum currently includes no training on how to recognise or diagnose them.

This gap, combined with his relationships with people living with a rare disease, became a powerful motivation for him to take action by organising webinars and creating infographics for peers and future colleagues.

“Many people don’t know rare diseases exist, so if we don’t speak, nothing changes.”

VincentMaksym’s (27) contribution underscored the impact of geopolitical realities on achieving rare disease equity and engaging young people in advocacy.Speaking via pre-recorded video, he shared how war had forced the postponement and relocation of sporting events linked to his advocacy work.

Despite unimaginable challenges, as leader of Rare Youth Ukraine, he continues to fight for a space “…created by and for young people with rare diseases where lived experience is turned into leadership, advocacy, and concrete action“.

While each Regional Representative spoke from a deeply personal perspective, common themes emerged, including the challenge of balancing advocacy with health and identity, and persistent inequities across healthcare systems.

Despite their different contexts, all six representatives were united by a shared belief that their experiences can inspire hope and drive meaningful change for others.

Beyond the panel discussion, the event created space for meaningful connection.During the networking session, participants were invited to contribute to the ‘Equity Wall’, writing a word that captured what equity for the rare disease community means in their eyes.

The result was a collective reflection of policy calls and values, such as resilience, solidarity and hope, brought together in one place.

While the event itself was one afternoon, its impact is ongoing. The conversations sparked in the room continue to echo through the event livestream, behind-the-scenes content shared across social media and the upcoming short film, to be released on 28 February.

Raising Youth Voices 2026 demonstrated that young people affected by rare diseases are ready to contribute meaningfully to discussions that shape research, policy and care.

Investing in youth leadership is an investment in the future and the sustainability of the rare disease movement.Events like Raising Youth Voices help ensure that advocacy remains informed, representative and forward-looking.

Across regions, young people face different realities, but many of the structural challenges are shared.

Bringing these voices together strengthens our collective ability to advocate for equitable solutions.“As the rare disease community looks to the future, Raising Youth Voices shows that when young people are given space, trust, and visibility, they do not just participate, they are ready to lead.

As Pablo reminded us during the discussion’s closing remarks, “Everything we do is a work-in-progress, built by many voices. And if we don’t speak up for each other, those voices disappear.”

Hannah Shirley Smith, Creative Communications Intern, EURORDIS.