Gene Therapy and Gene Editing for Thalassaemia and Sickle Cell Disorders: Is there a better future? | Saturday 16th November | 10:00-3:00pm | Butetown Community Centre

Come along to this in person & online community education event for Thalassaemia and Sickle Cell families in Wales, their advocates, carers and supporters. 
Expect expert talks, exhibitions & opportunities to network and learn more! Tea, coffee and light lunch provided. Registration for in person or online here: https://www.ticketsource.co.uk/wales-gene-park/e-gxqbze

When? Saturday 16th November, 10am – 3pm
Where? Butetown Community Centre, Loudoun Square, Butetown, Cardiff, CF10 5JA.

This event will be available in-person and online. In-person registration begins at 10:00am. Talks, discussion and networking from 10:30am to 2:30pm. Doors close at 3:00pm.

Tickets are FREE, All welcome.

Programme: 
10:00 – 10:30am:   DOORS OPEN & REFRESHMENTS

MORNING SESSION
Chairperson:  Mr Jemin Popat
10:30am – 11:00am: Welcome from the organisers: Faith Walker FOCSCT CIC, Dr Rhian Morgan Wales Gene Park & Emma Hughes Genetic Alliance
What we would like to know People from thalassaemia & sickle cell communities in Wales
11:00am – 12:00 noon:
Gene Therapy and Gene Editing for Thalassaemia and Sickle Cell Disorders Professor Paul Telfer, Clinical Lead for Haemoglobinopathy Services at Bart’s Health NHS Trust & Clinical Professor of Haemoglobin Disorders and Haematology, Queen Mary University of London
12:00 noon – 12:30pm: How do people cope with making decisions about curative therapies for themselves or for their children? Dr Kerry-Ann Holder, Clinical Psychologist Head of Department for Child Health Psychology at the Noah’s Ark Children’s Hospital for Wales, C&VUHB
12:30pm – 12:45pm: Comments from the UK Thalassaemia Society (UKTS) and the Sickle Cell Society (SCS) Ms Romaine Maharaj, Executive Director, UK Thalassaemia Society & Mr John James, OBE, Chief Executive Officer, Sickle Cell Society
12:45 – 1:45pm: REFRESHMENTS & BUFFET LUNCH

AFTERNOON SESSION               
Chairperson: Ms Roanna Maharaj UKTS
1:45pm – 2:15pm: From Bench to Bedsides, an overview of drug development. Ms Debbie Worthing, Lead Research Nurse, Advanced Therapies Wales & Dr Hannah Crocker Advanced Therapy Medicinal Products Outcomes Manager, NHS Wales Joint Commissioning Committee
2:15pm – 2:30pm: Comments from the Specialist Hereditary Anaemias Team: A clinical team’s perspective Dr Jonathan Kell, lead consultant haematologist for adults, the Specialised Hereditary Anaemias Service, University Hospital of Wales, C&V UHB
2:30pm – 3:00pm:   SUM UP & CLOSE MEETING