Connect, Learn, and Share: A Day For The Thalassaemia Community
The Haemoglobinopathy Coordinating Centre for the North of England is thrilled to invite you to a special day created just for you. This event is a fantastic opportunity to meet others, share your experiences, and learn from experts in a supportive and welcoming environment. We’ve brought together leading experts and inspiring patient advocates to provide you with the latest information and support you deserve.
Date: Saturday 13th September 2025 Location: Leeds (full details once registered)
What to Expect
- New Treatment: Get the latest updates and empowering sessions on pathways, pastoral support, fertility and the latest about gene therapy.
- Patient Stories: Connect with your community through inspiring stories and discussions.
- Workshops: Participate in interactive sessions designed to enhance your knowledge and provide practical support.
- Charities & Support Groups: Get advice and help from teams dedicated to your support.
- Meal & Refreshments: As always we will be providing free delicious refreshments throughout the day and a two-course lunchtime meal.
- Raffle: Back by popular demand, our legendary raffle is free to enter! We’ll announce the winner at the end of the day, so stick around for your chance to win.
Secure Your Free Spot
Registration is essential due to capacity and catering. Please follow this link www.tickettailor.com/events/hccmft/1790669 now to secure your spot. Once you register, you’ll receive full details, an email with your ticket (including a QR code and a downloadable PDF) and a link to the provisional agenda. We’ll send the final agenda and a patient handout closer to the event, so keep an eye on your inbox!
Unregistered attendees cannot be accommodated, and Leeds United security may deny entry. Please bring your PDF or printed ticket with you just in case. If you are bringing family or guests, please select the correct number of tickets. If your plans change, please let us know as soon as possible so we can offer your spot to someone else.
This event is for individuals with full thalassaemia (major/intermedia), not trait, to ensure the content is tailored to your specific needs.
Guest Speakers and Organisations
We are proud to bring together a fantastic lineup of speakers and organisations who are all dedicated to supporting the thalassaemia community. So far we have the following confirmed:
- NEBATA – North of England Bone Marrow and Thalassaemia Association
- UKTS – United Kingdom Thalassaemia Society
- Dr Farhan Ali Anjum – Adult Gene Therapy & Transplant Specialist (Manchester Royal Infirmary)
- Dr Ramya Nataraj – Paediatric Gene Therapy & Transplant Specialist (Manchester Children’s Hospital)
- Dr Beki James – Consultant Paediatric Haematologist (Leeds Children’s Hospital)
- Dr Karolina Palinska-Rudzka – Consultant Gynaecologist (St Mary’s Hospital Hospital)
- Shaun Wilson – Fertility Team (Oxford University Hospitals)
- Janette Watson – NHS Clinical Social Worker (MFT)
- Specialist CNS Teams – Thalassaemia Haemoglobinopathy Nurses (MFT)
- Charlene Hyde – Clinical Trials Coordinator (Manchester University NHS Foundation Trust Research Team)
- Dr Nandini Sadasivam – Consultant Haematologist (Manchester Royal Infirmary)
- Pharmacosmos Trial Team – Representatives from the Pharmaceutical Organisation
- Gabriel Theophanous – Operations Manager (UKTS)
- Patient Representatives – There will be a number of patients present. This will include those that have gone through the gene therapy process and will share their stories.
- Dr Sabiha Kausar – Consultant Paediatric Haematologist (Manchester Children’s Hospital)
A Day of Fun for the Kids too!
While you are learning and connecting, the children will have a brilliant time in their own dedicated room. We have a full day of fun planned, including:
- Get creative with a session led by Sarah-Jane Mason from Leeds Art Gallery.
- Be amazed by magic and entertainment from Barrington Powell later in the day.
- Enjoy cartoons, colouring-in, puzzles, and more!
Don’t miss out on this incredible opportunity. Register now, and we’ll see you there!
Event Poster:
