Meet the young advocates making a difference for our rare disease communityjulio 2023
EURORDIS – Rare Diseases Europe is today calling for volunteers to be part of the newly launched Rare Disease Day Young Ambassador Group, which will endeavour to harness the power of youth advocates, professionals and caregivers across the global rare disease movement.
To shine a spotlight on Europe’s own young rare disease advocates, we have spoken to some inspiring advocates about their experiences, their achievements, and hopes for a better tomorrow for people living with a rare condition.
When Rachele Somaschini, 29, was diagnosed with cystic fibrosis soon after birth, her parents were told that she may not reach adulthood. Not only did she defy these expectations, but she would go on to combine her passion for racing with vocal advocacy for greater awareness of, and research into, cystic fibrosis.
Rachele, who lives in Italy, won the EURORDIS Young Advocate Award in 2021 for her dedication to the project Correre Per Un Respiro (Racing for a Breath), through which she has raised over €300,000 for research projects selected by the Cystic Fibrosis Research Foundation. Now, she continues to fight for greater understanding of her condition.
Rachele encourages young advocates to bring their unique experiences and insights into the conversation by actively contributing to local associations. “Being part of an association helps advocates to feel less alone, and from there, they can get involved and find their own niche.”
“Everyone is needed and anyone, in their own little way, can make an important contribution, starting off with volunteer work. It is necessary to break the ice. And the rewards will surely outweigh the effort.”
“I am convinced of the importance of disseminating information about research projects, because it is only through research that we have hope.”
Alba Parejo’s first involvement in advocacy was not deliberate.
Alba, 22, lives in Spain with congenital melanocytic nevus, a type of skin pigmentation disorder which results in large birthmarks and moles that cover the skin. After sharing photos of herself on social media, she received an unexpected outpouring of support and questions about her condition. Not only did sharing her story have a positive impact on Alba and her self-image – it also helped others.
Before she knew it, she was a rare disease advocate, harnessing social media as a powerful tool to normalise her condition.
Alongside using social media to combat stigma, Alba has discovered that it can be used to provide patients with empowering information. Given that 22% of people with rare diseases across Europe cannot access the treatments they need because they are not available where they live, social media can help people to share awareness of therapies across national borders.
“There is an information asymmetry between doctors and patients. We can’t question their decision,” Alba affirms.
“We should be able to say, ‘could I try this treatment that is working in France?’. The relationship between doctors and patients should be one of negotiation and creating a space for both perspectives.”
“I think that we are always advocating, the difference is where we decide to do it. Our goal is to explain our needs in a way that changes things. We are creating our space, on social media and in the associations.”
Stefan Živković, 33, works at the National Organisation for Rare Diseases of Serbia (NORBS), having previously contributed to the future of rare disease policy through the Rare 2030 Foresight Study as part of the Young Citizens group.
For Stefan, becoming an advocate involves learning as much as possible about rare diseases, and connecting and collaborating with others in the community.
“As a young advocate, I have sometimes not been taken seriously due to my age and lack of experience. But this just gave me motivation to work harder, ask a lot of questions and get advice from my colleagues.”
“Young advocates are bringing fresh perspectives and ideas, and new passion and energy that might inspire others to get involved in patient advocacy.”
“We are the next generation of patient advocates, nurses, doctors, policy makers, and future leaders. We want to make young voices heard when shaping policy and research agendas for rare diseases.”
Join our Rare Disease Day Young Ambassadors Group!
Alba, Rachele, and Stefan are all young advocates who have proven themselves as influential drivers of progress within our community’s efforts to bring about faster diagnoses, improved healthcare, expanded treatment access, and greater awareness of rare diseases.
Are you a young individual eager to make a difference and spread awareness among your peers?
Are you also a passionate advocate for rare diseases between the ages of 18 and 30 years old?
If yes, consider joining our Rare Disease Day Young Ambassador Group!
Young Ambassadors will help the global Rare Disease Day campaign by advising the campaign on effective strategies to reach and actively engage with younger audiences, and supporting the development of campaign toolkits and resources.
Learn more about the criteria for, and responsibilities of, becoming a Young Ambassador, and help us build a more equitable and inclusive world for all people living with a rare disease.
Madison James, Communications Intern