{"id":1926,"date":"2025-08-25T16:05:40","date_gmt":"2025-08-25T16:05:40","guid":{"rendered":"https:\/\/mft.nhs.uk\/hcc\/?p=1926"},"modified":"2025-08-25T23:37:01","modified_gmt":"2025-08-25T23:37:01","slug":"thalassaemia-patient-event-leeds-2025","status":"publish","type":"post","link":"https:\/\/mft.nhs.uk\/hcc\/thalassaemia-patient-event-leeds-2025\/","title":{"rendered":"Thalassaemia Patient Event &#8211; Leeds 2025"},"content":{"rendered":"<h2>Connect, Learn, and Share: A Day For The Thalassaemia Community<\/h2>\n<p>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.\u00a0We&#8217;ve brought together leading experts and inspiring patient advocates to provide you with the latest information and support you deserve.<\/p>\n<p><b>Date:<\/b> Saturday 13th September 2025 <b>Location: <\/b>Leeds (full details once registered)<\/p>\n<h3><span style=\"text-decoration: underline\">What to Expect<\/span><\/h3>\n<ul>\n<li><b>New Treatment:<\/b> Get the latest updates and empowering sessions on pathways, pastoral support, fertility and the latest about gene therapy.<\/li>\n<li><b>Patient Stories:<\/b> Connect with your community through inspiring stories and discussions.<\/li>\n<li><b>Workshops:<\/b> Participate in interactive sessions designed to enhance your knowledge and provide practical support.<\/li>\n<li><strong>Charities &amp; Support Groups:<\/strong> Get advice and help from teams dedicated to your support.<\/li>\n<li><strong>Meal &amp; Refreshments:<\/strong> As always we will be providing free delicious refreshments throughout the day and a two-course lunchtime meal.<\/li>\n<li><strong>Raffle:<\/strong> Back by popular demand, our legendary raffle is free to enter! We&#8217;ll announce the winner at the end of the day, so stick around for your chance to win.<\/li>\n<\/ul>\n<h3><span style=\"text-decoration: underline\"><b>Secure Your Free Spot<\/b><\/span><\/h3>\n<p><b>Registration is essential<\/b> due to capacity and catering. Please follow this link <a href=\"http:\/\/www.tickettailor.com\/events\/hccmft\/1790669\">www.tickettailor.com\/events\/hccmft\/1790669<\/a> now to secure your spot.\u00a0Once you register, you\u2019ll receive full details, an email with your ticket (including a QR code and a downloadable PDF) and a link to the provisional agenda. We\u2019ll send the final agenda and a patient handout closer to the event, so keep an eye on your inbox!<\/p>\n<p><strong>Unregistered attendees cannot be accommodated<\/strong>, 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.<\/p>\n<p><i>This event is for individuals with full thalassaemia (major\/intermedia), not trait, to ensure the content is tailored to your specific needs.<\/i><\/p>\n<h3><span style=\"text-decoration: underline\">Guest Speakers and Organisations<\/span><\/h3>\n<p>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:<\/p>\n<ul>\n<li><b>NEBATA<\/b> \u2013 North of England Bone Marrow and Thalassaemia Association<\/li>\n<li><b>UKTS<\/b> \u2013 United Kingdom Thalassaemia Society<\/li>\n<li><b>Dr Farhan Ali Anjum<\/b> \u2013 Adult Gene Therapy &amp; Transplant Specialist (Manchester Royal Infirmary)<\/li>\n<li><b>Dr Ramya Nataraj<\/b> \u2013 Paediatric Gene Therapy &amp; Transplant Specialist (Manchester Children&#8217;s Hospital)<\/li>\n<li><b>Dr Beki James<\/b> \u2013 Consultant Paediatric Haematologist (Leeds Children\u2019s Hospital)<\/li>\n<li><b>Dr Karolina Palinska-Rudzka<\/b> \u2013 Consultant Gynaecologist (St Mary\u2019s Hospital Hospital)<\/li>\n<li><b>Shaun Wilson<\/b> \u2013 Fertility Team (Oxford University Hospitals)<\/li>\n<li><b>Janette Watson<\/b> \u2013 NHS Clinical Social Worker (MFT)<\/li>\n<li><b>Specialist CNS Teams<\/b> \u2013 Thalassaemia Haemoglobinopathy Nurses (MFT)<\/li>\n<li><b>Charlene Hyde<\/b> \u2013 Clinical Trials Coordinator (Manchester University NHS Foundation Trust Research Team)<\/li>\n<li><b>Dr Nandini Sadasivam<\/b> \u2013 Consultant Haematologist (Manchester Royal Infirmary)<\/li>\n<li><b>Pharmacosmos Trial Team<\/b> \u2013 Representatives from the Pharmaceutical Organisation<\/li>\n<li><b>Gabriel Theophanous<\/b> \u2013 Operations Manager (UKTS)<\/li>\n<li><b>Patient Representatives<\/b> \u2013 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.<\/li>\n<li><b>Dr Sabiha Kausar<\/b> \u2013 Consultant Paediatric Haematologist (Manchester Children&#8217;s Hospital)<\/li>\n<\/ul>\n<h3><span style=\"text-decoration: underline\">A Day of Fun for the Kids too!<\/span><\/h3>\n<p>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:<\/p>\n<ul>\n<li>Get creative with a session led by <b>Sarah-Jane Mason<\/b> from Leeds Art Gallery.<\/li>\n<li>Be amazed by magic and entertainment from <b>Barrington Powell <\/b>later in the day.<\/li>\n<li>Enjoy cartoons, colouring-in, puzzles, and more!<\/li>\n<\/ul>\n<h3><strong>Don&#8217;t miss out on this incredible opportunity. Register now, and we&#8217;ll see you there!<\/strong><\/h3>\n<p><em>Event Poster:<\/em><\/p>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"alignnone size-full wp-image-1930\" src=\"https:\/\/mft.nhs.uk\/app\/uploads\/sites\/16\/2025\/08\/2025-07-30_Thal_Pt_Event_QR_Flyer_TT_Edition-scaled.png\" alt=\"\" width=\"1680\" height=\"2560\" srcset=\"https:\/\/mft.nhs.uk\/app\/uploads\/sites\/16\/2025\/08\/2025-07-30_Thal_Pt_Event_QR_Flyer_TT_Edition-scaled.png 1680w, https:\/\/mft.nhs.uk\/app\/uploads\/sites\/16\/2025\/08\/2025-07-30_Thal_Pt_Event_QR_Flyer_TT_Edition-197x300.png 197w, https:\/\/mft.nhs.uk\/app\/uploads\/sites\/16\/2025\/08\/2025-07-30_Thal_Pt_Event_QR_Flyer_TT_Edition-672x1024.png 672w, https:\/\/mft.nhs.uk\/app\/uploads\/sites\/16\/2025\/08\/2025-07-30_Thal_Pt_Event_QR_Flyer_TT_Edition-768x1170.png 768w, https:\/\/mft.nhs.uk\/app\/uploads\/sites\/16\/2025\/08\/2025-07-30_Thal_Pt_Event_QR_Flyer_TT_Edition-1008x1536.png 1008w, https:\/\/mft.nhs.uk\/app\/uploads\/sites\/16\/2025\/08\/2025-07-30_Thal_Pt_Event_QR_Flyer_TT_Edition-1344x2048.png 1344w, https:\/\/mft.nhs.uk\/app\/uploads\/sites\/16\/2025\/08\/2025-07-30_Thal_Pt_Event_QR_Flyer_TT_Edition-1000x1524.png 1000w, https:\/\/mft.nhs.uk\/app\/uploads\/sites\/16\/2025\/08\/2025-07-30_Thal_Pt_Event_QR_Flyer_TT_Edition-60x91.png 60w, https:\/\/mft.nhs.uk\/app\/uploads\/sites\/16\/2025\/08\/2025-07-30_Thal_Pt_Event_QR_Flyer_TT_Edition-680x1036.png 680w\" sizes=\"auto, (max-width: 1680px) 100vw, 1680px\" \/><\/p>\n","protected":false},"excerpt":{"rendered":"<p>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.\u00a0We&#8217;ve brought [&hellip;]<\/p>\n","protected":false},"author":69,"featured_media":1929,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"inline_featured_image":false,"footnotes":""},"categories":[12],"tags":[],"class_list":["post-1926","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-news"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v26.9 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Thalassaemia Patient Event - Leeds 2025 - Haemoglobinopathy Coordinating Centre<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/mft.nhs.uk\/hcc\/thalassaemia-patient-event-leeds-2025\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Thalassaemia Patient Event - Leeds 2025 - Haemoglobinopathy Coordinating Centre\" \/>\n<meta property=\"og:description\" content=\"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. 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