For Toni Roberts, living with epidermolysis bullosa (EB), a rare genetic condition that makes the skin extremely fragile, has shaped her understanding of the challenges faced by people living with rare diseases.
Growing up in South Africa, her personal experience gave her a unique perspective on the importance of awareness, inclusion, and ensuring that people living with rare diseases have a voice.
Over time, this lived experience became the foundation of her advocacy. Today, Toni is part of the RDI Youth Leadership Programme, which brings together young advocates from the global rare disease community. Through her involvement, she works to raise awareness, share experiences, and contribute to a future where people living with rare diseases are better understood, supported, and included.
“I have seen young people turn pain into purpose and isolation into connection” Toni Roberts, rare disease advocate
At the heart of Toni’s story is a powerful message: personal experiences, however challenging, can become a source of strength and a driving force for change. Through her advocacy, Toni helps raise awareness of epidermolysis bullosa and brings attention to the experiences of people living with rare diseases, whose needs and perspectives are too often overlooked. For Toni, advocacy is not only about sharing her own story. It is also about creating opportunities for others to be heard, challenging misconceptions, and building a more inclusive rare disease community. Her journey reminds us that meaningful change begins when lived experiences are recognised, shared, and valued.
Through this intimate portrait, produced by Fondation Ipsen in collaboration with Rare Diseases International, discover how Toni Roberts is turning her experience of living with epidermolysis bullosa into a commitment to raising awareness and advocating for others.
A film about resilience, the power of lived experience, and a young advocate determined to make a difference for the rare disease community.
