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X-WR-CALDESC:Events for Cure EB
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DTSTART;TZID=Europe/London:20250424T130000
DTEND;TZID=Europe/London:20250424T140000
DTSTAMP:20260502T154448
CREATED:20250327T150405Z
LAST-MODIFIED:20250409T131229Z
UID:20501-1745499600-1745503200@cure-eb.org
SUMMARY:Research the Cure Webinar - April 2025
DESCRIPTION:[vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_column_text css=””]Mission EB \nDr Anna Martinez is joining us to talk about Mission EB\, the first large-scale stem cell clinical trial in EB. \nMission EB was led by Anna at Great Ormond Street Hospital in collaboration with clinicians at Birmingham’s Children’s Hospital. The trial was funded by the National Institute for Health Research (NIHR) in partnership with NHS England and NHS Improvement as well as a grant from Cure EB. \nThe Mission EB study was a double blind\, placebo-controlled\, cross-over study evaluating the safety and efficacy of mesenchymal stromal cells\, or MSCs (a type of stem cell) in 30 pediatric patients in the UK with intermediate or severe RDEB. \nSince study completion\, INmune Bio has made an agreement with GOSH for exclusive commercial use of the data and will market the treatment as CORDStrom. INmune Bio intends to support a 12-month open label study at GOSH\, to include all patients enrolled in the Mission EB study. \nThis is a must-see webinar for EB patients and their loved ones as we hear from Anna about the results and next steps for CORDStrom.[/vc_column_text][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_empty_space]Register your free place[vc_empty_space][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_column_text css=””]When? Thursday 24th April 2025\, 1pm BST \nWhere? Online – register here \nWho? The webinar is open to all – EB patients & families\, researchers\, clinicians\, and anyone with an interest in EB \n  \nPlease note that this is a live event only – a recording won’t be shared after the event.[/vc_column_text][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_empty_space][vc_separator type=”normal”][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_column_text css=””] \n\n\n\n\n\n\n\nHosted by Sharmila Collins\, founder of Cure EB\, this is a free event open to all\, but you must register. \nThere will be an opportunity to ask questions during the webinar\, but please also submit your questions in advance here. \n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n[/vc_column_text][vc_empty_space][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_empty_space][vc_separator type=”normal”][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column width=”1/3″][vc_single_image image=”19918″ css=”” qode_css_animation=””][/vc_column][vc_column width=”2/3″][vc_column_text css=””]Anna is a leading paediatric dermatology consultant and National Epidermolysis Bullosa Service lead at Great Ormond Street Hospital in London. She was the lead investigator on Mission EB – the first large-scale stem cell clinical trial for children with EB\, funded by Cure EB in collaboration with the National Institute for Health and Care Research (NIHR).[/vc_column_text][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_empty_space]Research the Cure webinar registration[vc_empty_space][/vc_column][/vc_row]
URL:https://cure-eb.org/event/researchthecure-apr25/
CATEGORIES:Research Events
ATTACH;FMTTYPE=image/png:https://cure-eb.org/wp-content/uploads/2025/03/Research-Webinar-2025-news-research-events.png
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DTSTART;VALUE=DATE:20250427
DTEND;VALUE=DATE:20250428
DTSTAMP:20260502T154448
CREATED:20240314T171232Z
LAST-MODIFIED:20250130T113012Z
UID:19518-1745712000-1745798399@cure-eb.org
SUMMARY:London Marathon 2025
DESCRIPTION:[vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_column_text css=””]The TCS London Marathon is an incredible experience! Taking place in April\, the route takes in many of London’s best landmarks including Buckingham Palace\, the Cutty Sark\, Tower Bridge and Canary Wharf. \nIf you would be interested in running for Cure EB in 2026\, do contact us for more information.[/vc_column_text][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_column_text css=””] \nMeet our marathon runners\n[/vc_column_text][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column width=”1/4″][vc_single_image image=”20399″ alignment=”center” css=”” qode_css_animation=””][/vc_column][vc_column width=”3/4″][vc_column_text css=””] \nAndy\nDad of 4 and uncle to Poppy\, who has RDEB\, Andy isn’t going to let a lack of previous running get in his way of completing the marathon. \n“My determination to achieve this goal though\, comes from that fact that any pain I suffer in this process will be a fraction of what EB sufferers face all day\, every day.” \nSponsor Andy[/vc_column_text][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_empty_space][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column width=”1/4″][vc_single_image image=”20398″ alignment=”center” css=”” qode_css_animation=””][/vc_column][vc_column width=”3/4″][vc_column_text css=””] \nDiana\nNew mum Diana laughs in the face of sleep deprivation and thought she’d add training for a marathon into the mix! \n“I am juggling family life\, work and training for the London marathon 2025! The more I learn about Cure EB\, the more I want to raise” \nSponsor Diana[/vc_column_text][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_empty_space][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column width=”1/4″][vc_single_image image=”20396″ alignment=”center” css=”” qode_css_animation=””][/vc_column][vc_column width=”3/4″][vc_column_text css=””] \nJames\nGodfather to Poppy\, who has RDEB\, James knows about the non-stop pain of EB and it’s spurring him on to run the marathon for Cure EB this year. \n“For my small part\, I will run this marathon as fast as possible and try and raise as much money as I can to help find a cure so that Poppy and others like her don’t have to suffer.” \nSponsor James[/vc_column_text][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_empty_space][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column width=”1/4″][vc_single_image image=”20397″ alignment=”center” css=”” qode_css_animation=””][/vc_column][vc_column width=”3/4″][vc_column_text css=””] \nJess\nMum to Fleur\, who has EB\, Jess has very personal reasons for fundraising for Cure EB. \n“Although there’s no cure for EB yet\, charities like Cure EB and us (me\, Jason\, Ozzie & Fleur) really do believe there will be one day very soon and fundraising is one way to get closer to this.” \nSponsor Jess[/vc_column_text][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column][vc_empty_space][/vc_column][/vc_row][vc_row css_animation=”” row_type=”row” use_row_as_full_screen_section=”no” type=”full_width” angled_section=”no” text_align=”left” background_image_as_pattern=”without_pattern”][vc_column width=”1/4″][vc_single_image image=”20400″ alignment=”center” css=”” qode_css_animation=””][/vc_column][vc_column width=”3/4″][vc_column_text css=””] \nZach\nSerious runner Zach is ready to smash the London Marathon! \n“Running 26.2 miles is my way of supporting this mission and raising awareness for those battling EB daily. Join me in making a difference—every donation brings us closer to a cure. Together\, we can create hope and healing!” \nSponsor Zach[/vc_column_text][/vc_column][/vc_row]
URL:https://cure-eb.org/event/london-marathon-2025/
CATEGORIES:Sports Events
ATTACH;FMTTYPE=image/jpeg:https://cure-eb.org/wp-content/uploads/2023/01/London-Marathon-Events-900x450-1-jpg.webp
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