Founded on July 5, 2001, the VIDAS RARAS Institute, headquartered in Guarulhos, is a nationwide nonprofit, non-governmental organization that aims to promote the constitutional rights of people with rare diseases who are in a vulnerable situation. The Vidas Raras Institute wants to raise awareness among society and the medical community for the presence of rare diseases.
Behind BORBOLETA.XLH is Vanessa Giovana, who herself is affected by XLH. Vanessa completed her Master of Science at the Federal University of São Paulo in 2019, she is currently researching together with an interdisciplinary team on rare diseases, in particular on XLH-X-linked hypophosphatemia. She makes a voluntary contribution to the Rare Disease Patients Association and supports patients with their experiences and information.

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