Rhiannon Walls
Global Rare Disease Day Lead, EURORDIS-Rare Diseases Europe
The next generation is here, and they want you to take them seriously.
Every year, Rare Disease Day unites communities worldwide in fighting for equity for the 300 million people living with rare diseases.
New initiative: Raising Youth Voices
Raising Youth Voiceswas born out of a collaboration between EURORDIS-Rare Diseases Europe, Rare Diseases International (RDI) and the National Organization for Rare Disorders (NORD), realised with the support of Fondation Ipsen.
Designed to ensure that young people worldwide are included in shaping the future of rare disease policy, research, care and community support, the initiative culminated in a roundtable in early February. Youth representatives from each of the six UN geoscheme regions presented the Rare Disease Day projects they’re leading in their communities and broke down issues impacting young advocates.
Many of the challenges discussed by regional representatives will be familiar to others in the rare disease community, including limited treatment and specialised care access, funding gaps and social stigma and isolation. At the same time, young people are navigating the uncharted waters of a volatile global landscape and a rapidly shifting digital frontier.
Young people are using their voices, and it’s our responsibility to listen.
Upsides and downsides of social media
Social media’s impact featured prominently in the roundtable discussion, with representatives reflecting on its power to foster solidarity, while raising questions around the vulnerabilities of maintaining an online presence.
Discussions around balance, burnout and self-belief — including experiences of imposter syndrome and age-based dismissal — highlighted the resilience required to break into the space and the need for young people to be treated as sustainable, equal partners.
“The decisions taken now are going to have an effect years down the line. If we, the young people, do not take ownership over this, no one is going to come in and save us. It is us. It’s up to us.” – Pablo Ramirez Uribe, Regional Representative for South America
Across vastly different regional contexts, these young advocates have found common ground in shared struggles, leveraging the collective power of their experiences to build a better world for the rare disease community. Young people are using their voices, and it’s our responsibility to listen.
Watch the Raising Youth Voices short film by visiting the Rare Disease Day YouTube channel.
