Beyond the clinic: Sickle Cell Disease

This webinar continues a new series of webinars that highlights the lived experiences behind genetic conditions. In an effort to highlight experts outside of the medical field the Medical Genetics Section will be using its platform to allow people with lived experience and other stakeholders to provide insight into genetic conditions, that are usually taught from a biomedical perspective.

This meeting focuses on Sickle Cell Disease, the most common rare genetic condition in the UK. Despite this fact people with Sickle Cell Disease still have considerable unmet needs including lack of access to treatment and investment in research. The treatment of patients with Sickle Cell Disease has also made news headlines in recent times due to failings in the health system. In this meeting we will hear from advocates in this area to understand the needs of patients and how we can better serve this community.

We will also hear from contributors to The No-One’s Listening report published by The Sickle Cell Society and The All Party Parliamentary Group for Sickle Cell and Thalassaemia. 

This meeting aims to:

• Raise awareness of how Sickle Cell Disease impacts families and communities
• Highlight the unmet needs of patients living with Sickle Cell Disease
• Learn from the outcomes of The No-one’s Listening Report 

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