RDI announces that Yann Le Cam is stepping down from his position on the Council of Directors to pursue other professional activities. We would like to take this opportunity to express our deep gratitude to Yann for his many years of leadership and commitment to RDI and the global rare disease movement. Yann’s vision and tireless advocacy were integral to the founding, development and growth of RDI. We thank Yann for his unparalleled contribution to the rare disease community. Yann’s legacy and impact on RDI and the rare disease community will be felt for decades to come.
“Yann’s dedication and leadership have been instrumental into shaping RDI into the global voice for Persons Living with a Rare Disease,” said Alexandra Heumber-Perry, CEO of RDI. “Under his guidance, RDI has strengthened its global impact and established pathways to champion the rights of PLWRD worldwide. We are extremely grateful for the passion and expertise he has shared with us.”
Yann Le Cam will be replaced on the Council of Driectors by Antoine Daher of Casa Hunter, Brazil. Born in Lebanon, Toni, as he is more commonly known, is a Brazilian businessman who has dedicated his life to helping people living with rare diseases in Brazil. He speaks Arabic, French, English and Portuguese and has a Master in Political and Administrative Science. He became a rare disease advocate after his son was diagnosed with Hunter Syndrome (MPS II), an inborn error of metabolism. Toni is founder and president of Casa Hunter, president of Febrararas, the Brazilian Federation of Rare Disease Associations, and co-founder and president of Casa dos Raros. He works closely with the Brazilian Parliament to fight for public health policies and laws that grant a better life for people with rare diseases.
Toni comments, “Being a member of RDI’s board is an invaluable experience for me. It is a unique opportunity to represent 50 million rare disease patients and their caregivers while also learning from the global rare disease community. I am also grateful for the chance to share our local initiatives, such as Casa dos Raros (House of the Rare )”.
As the runner-up in RDI’s 2024 Council Elections, Toni will serve on the Council of Directors for the remainder of Yann’s term, which ends in June 2025, when a new election will be held.
