{"id":164,"date":"2024-07-06T17:38:38","date_gmt":"2024-07-06T16:38:38","guid":{"rendered":"https:\/\/blogs.imperial.ac.uk\/uk-sickle\/?p=164"},"modified":"2024-07-06T17:38:38","modified_gmt":"2024-07-06T16:38:38","slug":"june-a-month-of-involvement","status":"publish","type":"post","link":"https:\/\/blogs.imperial.ac.uk\/uk-sickle\/2024\/07\/06\/june-a-month-of-involvement\/","title":{"rendered":"June &#8211; A month of involvement"},"content":{"rendered":"<p><span style=\"color: #333399\"><strong>A quick recap<\/strong><\/span><\/p>\n<p><a href=\"https:\/\/blogs.imperial.ac.uk\/uk-sickle\/2024\/06\/04\/may-sharing-science\/\">Last month,<\/a> we focused on collaboration, networking and the sharing of our preliminary findings. We previously mentioned our abstract submission to the Annual Sickle Cell and Thalassaemia (<a href=\"https:\/\/ascatconferences.com\/\">ASCAT<\/a>) conference. We are pleased to announce that our abstract on &#8216;Research disparities in sickle cell disease, cystic fibrosis and haemophilia in the UK&#8217; has been accepted for an oral presentation at the ASCAT conference in October 2024.<\/p>\n<p><span style=\"color: #333399\"><strong>What have we been up to this month?<\/strong><\/span><\/p>\n<p>This month, we are excited to showcase our efforts in patient engagement and sharing of our work during key events including World Sickle Cell Day and the Imperial Great Exhibition Road Festival.<\/p>\n<p><span style=\"color: #333399\"><strong>UK Public &amp; Patient Involvement (PPI)<\/strong><\/span><\/p>\n<p><img loading=\"lazy\" decoding=\"async\" width=\"300\" height=\"248\" class=\"wp-image-166 alignleft\" src=\"http:\/\/blogs.imperial.ac.uk\/uk-sickle\/files\/2024\/07\/IMG-20240616-WA0009-e1719926413505-300x248.jpg\" alt=\"\" \/><\/p>\n<p>Rutendo volunteered the <a href=\"https:\/\/www.imperial.ac.uk\/events\/177858\/great-exhibition-road-festival-2024\/\">Imperial College Great Exhibition Road Festival<\/a> on Saturday 15th June with the <a href=\"https:\/\/www.imperial.ac.uk\/immunology-inflammation\/research\/invisible-warrior\/\">Invisible Warrior project<\/a> to raise awareness of sickle cell disease. She used this opportunity to discuss her current work on the NHS RHO-funded project.<\/p>\n<p>She had a great time speaking to the public and learning about the great work other sickle cell researchers are working on at the College.<\/p>\n<p>On Saturday 29th June, Fred used a local event of the <a href=\"https:\/\/togetherwecan.uk\/\">Congenital Anaemia Network<\/a> (CAN) to meet with people with sickle cell disease and to discuss about their live experiences and their awareness of the <a href=\"https:\/\/nhr.mdsas.com\/\">National Haemoglobinopathy Register<\/a>. The poster on display, entitled &#8220;Your health, your data, your views&#8221;, was co-created with a couple of people with sickle cell disease whose input was incredibly valuable! Fred had engaged conversations with teenagers, parents, haematologists, &#8230; which were all very informative.<\/p>\n<p><span style=\"color: #333399\"><strong>Global World Sickle Cell Day<\/strong><\/span><\/p>\n<p>Wednesday 19th June was World Sickle Cell Day.<\/p>\n<p>To commemorate this event, Rutendo attended an Open Day event at Hammersmith Hospital hosted by the <a href=\"https:\/\/www.imperial.ac.uk\/news\/251453\/imperials-sickle-cell-research-group-welcomes\/\">Imperial Sic<\/a><a href=\"https:\/\/www.imperial.ac.uk\/news\/251453\/imperials-sickle-cell-research-group-welcomes\/\">kle Cell Group<\/a> to raise awareness on activities in health, research and advocacy in sickle cell disease within the Imperial College, Imperial healthcare NHS trust and beyond. Rutendo presented her sickle cell comparative research and listened to talks on exciting work and developments in sickle cell including from Dr <a href=\"https:\/\/profiles.imperial.ac.uk\/s.okoli\">Steven Okoli<\/a>, consultant haematologist and co-founder of the Imperial Sickle Cell Group, Natasha Gordon-Douglas, lead mentor at the <a href=\"https:\/\/www.sicklecellsociety.org\/\">Sickle Cell Society<\/a> and <a href=\"https:\/\/profiles.imperial.ac.uk\/g.sathyamoorthy\">Ganesh Sathyamoorthy<\/a>, deputy director of the <a href=\"https:\/\/www.arc-nwl.nihr.ac.uk\/research\/ethnicity-health-unit\">Ethnicity and Health Unit<\/a>.<\/p>\n<p><img loading=\"lazy\" decoding=\"async\" width=\"828\" height=\"287\" class=\"wp-image-179 aligncenter\" src=\"http:\/\/blogs.imperial.ac.uk\/uk-sickle\/files\/2024\/07\/1718824126898.jpg\" alt=\"\" \/><\/p>\n<p>Meanwhile, Fred participated in the first International Conference Sickle Cell Disease in Lusophone Countries in Lisbon, Portugal. His presentation focused on the global burden of sickle cell disease and the recommendations of the <a href=\"https:\/\/www.thelancet.com\/commissions\/sickle-cell-disease\"><em>Lancet Haematology<\/em> Commission on Sickle Cell Disease<\/a>. The Conference had representatives from the <a href=\"https:\/\/www.afro.who.int\/publications\/who-sickle-package-interventions-sickle-cell-disease-management\">World Health Organization<\/a>, the <a href=\"https:\/\/ehaweb.org\/\">European Hematology Association<\/a> (EHA), <a href=\"https:\/\/eurobloodnet.eu\/ern-eurobloodnet\/\">ERN-EuroBloodN<\/a><a href=\"https:\/\/eurobloodnet.eu\/ern-eurobloodnet\/\">et<\/a>,\u00a0patient advocates, governmental authorities, health ministries, and healthcare professionals from Angola, Brazil, Cape Verde, Guinea-Bissau, Mozambique, Portugal, and Sao Tome &amp; Principe. The need for reliable epidemiological data was one of the key take-home messages from this meeting.<\/p>\n<p><img loading=\"lazy\" decoding=\"async\" width=\"1024\" height=\"525\" class=\"wp-image-174 aligncenter\" src=\"http:\/\/blogs.imperial.ac.uk\/uk-sickle\/files\/2024\/07\/WSCDD-2024-Lisbon-1024x525.jpeg\" alt=\"\" \/><\/p>\n<p>&nbsp;<\/p>\n<p><span style=\"color: #333399\"><strong>Workshops &amp; Online Survey<\/strong><\/span><\/p>\n<p>The <a href=\"https:\/\/www.jla.nihr.ac.uk\/\">James Lind Alliance<\/a> and <a href=\"https:\/\/www.genomicsengland.co.uk\/\">Genomics England<\/a> are conducting a project in collaboration with the <a href=\"https:\/\/www.sicklecellsociety.org\/\">UK Sickle Cell Society<\/a> on research priorities in genomics for sickle cell disease. Fred is involved in this project as an Information Scientist, alongside patient representatives and healthcare professionals. The team is organizing a series of <strong>workshops<\/strong> in person and online for young adults, adults, families and healthcare professionals. The first workshop will be held in London for adults (over 30s) on Tuesday 9th July. Participants can register using the following <a href=\"https:\/\/www.eventbrite.co.uk\/e\/sickle-cell-and-genomics-workshop-london-over-30s-tickets-938639936317?aff=oddtdtcreator\">link<\/a>.<\/p>\n<p><img loading=\"lazy\" decoding=\"async\" width=\"1024\" height=\"1024\" class=\"wp-image-176 aligncenter\" src=\"http:\/\/blogs.imperial.ac.uk\/uk-sickle\/files\/2024\/07\/LONDON-WORKSHOP-OVER-30S-1024x1024.png\" alt=\"\" \/><\/p>\n<p>Finally, <a href=\"https:\/\/eurobloodnet.eu\/\">EuroBloodNet<\/a>, in partnership with the <a href=\"https:\/\/www.thelancet.com\/commissions\/sickle-cell-disease\"><em>Lancet Haematology<\/em> Commission on Sickle Cell Disease<\/a> and <a href=\"https:\/\/ascatconferences.com\/\">ASCAT<\/a>, is conducting a <strong>global survey<\/strong> of people with sickle cell disease to find out about their priorities in relation to research, education and policy. The survey was launched on the 19th of June and is available through the QR code or via this <a href=\"https:\/\/ec.europa.eu\/eusurvey\/runner\/GlobalSurveyImproveSCDoutcomes\">link<\/a>.<\/p>\n<p><img loading=\"lazy\" decoding=\"async\" width=\"150\" height=\"150\" class=\"aligncenter wp-image-175 size-thumbnail\" src=\"http:\/\/blogs.imperial.ac.uk\/uk-sickle\/files\/2024\/07\/QR-Survey-SCD-2024-150x150.png\" alt=\"\" \/><\/p>\n","protected":false},"excerpt":{"rendered":"<p>A quick recap Last month, we focused on collaboration, networking and the sharing of our preliminary findings. We previously mentioned our abstract submission to the Annual Sickle Cell and Thalassaemia (ASCAT) conference. We are pleased to announce that our abstract on &#8216;Research disparities in sickle cell disease, cystic fibrosis and haemophilia in the UK&#8217; has [&hellip;]<\/p>\n","protected":false},"author":1785,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[1],"tags":[],"class_list":["post-164","post","type-post","status-publish","format-standard","hentry","category-uncategorised"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.2 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>June - A month of involvement - Sickle Cell Comparative Research to Inform Policy Project<\/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:\/\/blogs.imperial.ac.uk\/uk-sickle\/2024\/07\/06\/june-a-month-of-involvement\/\" \/>\n<meta property=\"og:locale\" content=\"en_GB\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"June - A month of involvement - Sickle Cell Comparative Research to Inform Policy Project\" \/>\n<meta property=\"og:description\" content=\"A quick recap Last month, we focused on collaboration, networking and the sharing of our preliminary findings. 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