Marina Zapparoli Manzoni on the power of finding and building a community

In this episode of Rare on Air, host Julien Poulain interviews Marina Zapparoli-Manzoni, President of Euro-HSP (www.eurohsp.eu/) and Treasurer of AIVI.PS (www.aivips.it/) , organisations dedicated to supporting those affected by Hereditary Spastic Paraplegia (HSP).
Marina shares her family's journey with HSP, discussing the emotional challenges they faced in securing a diagnosis for her son, Edoardo. She highlights the importance of forming a supportive community for individuals undergoing similar struggles. Marina also delves into her advocacy work, the evolution of HSP research, and the potential for drug repurposing.
Inspired by her participation at the EURORDIS Open Academy in Barcelona earlier this month, Marina emphasises the critical role of patient advocacy in advancing treatments for rare diseases. She expresses her hopes for guiding and informing HSP research to ensure that scientific efforts are truly aimed at enhancing the quality of life for HSP patients.
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