Rare Disease Day Special 2023

In this episode of Let’s Talk Rare, as we commemorate World Rare Disease Day, Georgie and Owen are joined by Louise Fish and Dan Lewi to discuss all aspects surrounding rare diseases, from key challenges patients face in getting access to life-saving medicines, the clinical trial burden, EU pharmaceutical strategy and more.

The topics covered include: Why genetic screening of new-borns in the UK lags behind the EU, funding rare disease research, clinical trial burden, patient registries, patient experience data and its relevance, revamping data sharing with families, and how pharma can involve patients earlier.

Louise Fish Bio:

Louise is a senior leader with over 25 years of executive and non-executive board experience in health and social care in charitable, public and commercial sectors. She is passionate about improving the NHS and social care services by listening to and learning from the experiences of patients and their families. She has a strong understanding of how to drive change.

Genetic Alliance UK: https://geneticalliance.org.uk/

Dan Lewi Bio:

Dan is the Chief Executive and co-founder of the only Tay-Sachs and Sandhoff disease-specific charity in the UK called The Cure & Action for Tay-Sachs (CATS) Foundation. Selected and appointed as the Chairman of the European Tay-Sachs and Sandhoff Charity Consortium (ETSCC), which has brought together all the Tay-Sachs and Sandhoff charities in Europe.