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.

Dan Lewi‘s eldest daughter Amelie was diagnosed with Tay-Sachs in 2011 at 15 months of age and upon finding that there was no dedicated advocacy group providing support for families affected by this disease in the UK he set set-up the Cure & Action for Tay-Sachs (CATS) Foundation with his wife Patricia. Since the group was launched, they have been able to grow The CATS Foundation so that it now offers a variety of services to its family members and has been actively involved in the research investigating therapeutic treatments for Tay-Sachs and Sandhoff disease. In addition to this, Dan is the one of the founding members and Chairman of the European Tay-Sachs and Sandhoff Charity Consortium which brings together all the European patient groups leading the fight against the diseases and is part of the team establishing the IGGA, a global organisation bringing together all the advocacy groups for GM1 and GM2. Dan is fully committed to leading the charity towards its goal of finding a treatment so that there is hope for those families affected by Tay-Sachs and Sandhoff in the future

Other relevant references | Outras referências relevantes:

CATS Foundation (website)

Contacts | Contactos:

Episode edited by João Cunha Studios