About this event
- Date and time Mon 31 Jul 2023 from 5:00pm to 6:05pm
- Location Online
- Organised by Medical Genetics
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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Agenda
View the programme
Welcome and introduction
Dr Lucy McKay, Chief Executive Officer, Medics 4 Rare Diseases
'No One's Listening' Report: Sickle Cell and Thalassemia All Party Parliamentary Group
Seyi Afolabi, Parliamentary and Policy Officer for Sickle Cell and Thalassaemia All Party Parliamentary Group
Closing the Gap: Collaborative Approaches in Sickle Cell Disease
Dr Layan Allawi, Darzi Fellow in Sickle Cell, Northwick Park Hospital
The lived experience: Beyond the no one's listening report
Mr Dunstan Nicol-Wilson, Patient and Clinical Project Manager, Scout Clinical
Questions and answers
Close of meeting
Location
Online
Registration for this webinar will close 1 hour prior to the start time. You will receive the webinar link 1 hour before the meeting. Late registrations will not be accepted.
Webinar recordings will be available for registered delegates up to 60 days after the live webinar, via Zoom. The link will be sent 24 hours after the webinar takes place.
This webinar will be recorded and stored by the Royal Society of Medicine and may be distributed in future on various internet channels.