“Raising Youth Voices” Launches Global Platform for Young Rare Disease Advocates
TEDDY Network is pleased to highlight the launch of “Raising Youth Voices,” a new global initiative coordinated by Rare Disease Day that seeks to ensure young people living with rare diseases are meaningfully included in high-level conversations shaping policy, research, care, and community support worldwide.
Rare Disease Day is the internationally recognised awareness campaign coordinated by EURORDIS-Rare Diseases Europe, with a long-standing commitment to inclusivity and patient engagement. Since its establishment in 2008 by EURORDIS and its Council of National Alliances, the campaign has brought together patient organisations, policymakers, researchers, healthcare professionals, and community advocates from more than 100 countries each year to champion the needs of the estimated 300 million people affected by rare diseases globally. Its mission is to raise awareness of the daily challenges faced by people living with rare diseases and to advance equity in healthcare access, treatment, and social support.
A Global Platform for Youth Engagement
“Raising Youth Voices” aims to strengthen youth participation in the rare disease landscape by providing a dedicated platform for young advocates from different regions to connect, exchange experiences, and engage in dialogue on youth engagement, patient advocacy, and inclusive health policymaking. The initiative builds on established youth-led efforts, including the Rare Disease Day Young Ambassador Group coordinated by EURORDIS, which brings together young leaders worldwide to collaborate and drive advocacy initiatives.
By placing young people at the centre of decision-making processes, the initiative acknowledges their essential role in shaping the future of rare disease research, care, and policy. Through their lived experiences and advocacy work, youth representatives will contribute to defining priorities and influencing approaches across sectors, ensuring that future strategies reflect the needs and perspectives of the next generation.
Event Details
The event for the initiative will be held in person on 4 February 2026 at the Recinte Modernista de Sant Pau in Barcelona, Spain. The session is scheduled from 15:00 to 17:30 CET, and will consist of a panel discussion featuring youth representatives from across the world, followed by a structured networking session to foster collaboration and community building.
The panel will be moderated by Rhiannon Walls, Global Rare Disease Day Lead at EURORDIS-Rare Diseases Europe, and will feature youth representatives who bring diverse lived experiences and advocacy work across the rare disease community.
Panel Speakers
Liam McCarthy (21, Atlanta, USA)
Living with classic congenital adrenal hyperplasia, Liam amplifies youth voices through innovative social media campaigns and patient advocacy work.
Maksym Biskubskyi (27, Kyiv, Ukraine)
Living with recessive dystrophic epidermolysis bullosa, Maksym works to advance the inclusion of people with rare diseases in sport and public life.
Yu Su (25, Chongqing, China)
Living with spinal muscular atrophy, Yu leads youth-driven inclusion projects advancing accessibility in higher education.
Pablo Ramirez Uribe (30, Colombia)
Living with APS-1, Pablo develops policy toolkits linking global rare disease frameworks with regional stakeholders.
Vincent Mugwati (22, Gweru, Zimbabwe)
Vincent leads awareness and policy-focused initiatives engaging young people and future healthcare providers.
Stephanie Taylor (30, Australia)
A parent advocate whose daughter lives with INAD, Stephanie leads awareness and community-building initiatives through The INAD Foundation Australia.
This event will provide a unique opportunity for young advocates and stakeholders to engage in a dynamic dialogue about how youth can contribute to meaningful change in rare disease research, policy, and care systems.
Further details are available in the agenda: LINK
Why Youth Engagement Matters
Young people living with rare conditions face unique obstacles, including transition challenges in care, limited representation in research prioritisation, and systemic gaps in education and social services. Providing a platform such as “Raising Youth Voices” allows these advocates to contribute directly to shaping research agendas, policy frameworks, and community strategies that will affect their futures.
The initiative reflects a broader movement within the rare disease community to prioritise youth leadership and participation. EURORDIS’s Young Ambassador efforts supporting advocates aged 18 to 30 to connect, influence campaign strategies, and elevate youth-led perspectives provide a strong foundation for this expanded global engagement.
How to Get Involved
Individuals and organisations interested in learning more about “Raising Youth Voices,” registration details, and how to participate can visit the official campaign webpage at:
https://www.rarediseaseday.org/raising-youth-voices/
By spotlighting young voices and strengthening their role in advocacy and decision-making, TEDDY Network reaffirms its commitment to inclusive dialogue and sustainable change in rare disease research and support systems.