80: Dan Lewi: Rare Disease Advocacy: Trust and Transparency in Action [EN]
In today’s CRUZAMENTO Podcast, André Correia e Daniel Guedelha talked with Daniel Lewi, co-founder and CEO of the CATS Foundation, about the world of rare disease advocacy. Dan shares his personal journey as a patient advocate and discusses the mission of the CATS Foundation, which focuses on raising awareness and driving research for Tay-Sachs and Sandhoff disease. He highlights the importance of collaboration and transparency in advocating for better treatment options, emphasising the need for data sharing, especially in drug repurposing efforts. Dan also shares insights into engaging with pharmaceutical companies, emphasising the importance of building trust, clear communication, and collaborative strategies. Throughout the conversation, the critical role of patient voices, diverse perspectives, and community involvement in shaping advocacy efforts is emphasised, ensuring that the needs and experiences of individuals impacted by rare diseases are at the forefront of research and development initiatives.
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