BEGIN:VCALENDAR VERSION:2.0 PRODID:-//Beacon for rare diseases - ECPv6.16.3//NONSGML v1.0//EN CALSCALE:GREGORIAN METHOD:PUBLISH X-WR-CALNAME:Beacon for rare diseases X-ORIGINAL-URL:https://www.rarebeacon.org X-WR-CALDESC:Events for Beacon for rare diseases REFRESH-INTERVAL;VALUE=DURATION:PT1H X-Robots-Tag:noindex X-PUBLISHED-TTL:PT1H BEGIN:VTIMEZONE TZID:Europe/Paris BEGIN:DAYLIGHT TZOFFSETFROM:+0100 TZOFFSETTO:+0200 TZNAME:CEST DTSTART:20240331T010000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:+0200 TZOFFSETTO:+0100 TZNAME:CET DTSTART:20241027T010000 END:STANDARD BEGIN:DAYLIGHT TZOFFSETFROM:+0100 TZOFFSETTO:+0200 TZNAME:CEST DTSTART:20250330T010000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:+0200 TZOFFSETTO:+0100 TZNAME:CET DTSTART:20251026T010000 END:STANDARD BEGIN:DAYLIGHT TZOFFSETFROM:+0100 TZOFFSETTO:+0200 TZNAME:CEST DTSTART:20260329T010000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:+0200 TZOFFSETTO:+0100 TZNAME:CET DTSTART:20261025T010000 END:STANDARD END:VTIMEZONE BEGIN:VEVENT DTSTART;TZID=Europe/Paris:20250401T110000 DTEND;TZID=Europe/Paris:20250401T123000 DTSTAMP:20260610T104125 CREATED:20250227T091847Z LAST-MODIFIED:20250328T155445Z UID:60309-1743505200-1743510600@www.rarebeacon.org SUMMARY:Unlocking research opportunities: Partnering with academics DESCRIPTION:Are you looking to engage in research but don’t know where to start?\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Research is a key priority for many patient groups but connecting with the right academic partners is not often straightforward. \nWith limited awareness of rare conditions in academia\, knowing where to start\, initiating conversations\, and building lasting relationships with the right research teams can be challenging.\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Why is partnering with academics important?\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Collaboration between patient groups and academics is key to speeding up treatments\, improving care\, and keeping research patient-centric. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Academics bring both scientific expertise and the necessary infrastructure to conduct studies\, while patient groups help by: \n \n\nContributing to turning scientific discoveries into real benefits applicable to patients\nLeveraging their established networks to help recruit patients while prioritising patient needs in the research\nStrengthening research proposals with real-world data to enhance funding opportunities\n\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n What will you learn in this webinar?\n \n \n \n \n \n \nHow academic research works and the structures that shape it\nWhere to find researchers working on your condition and how to connect with them\nPractical ways to boost the appeal of your patient group to researchers\nA real-world example of a patient group successfully partnering with academics and getting involved in research\n\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Meet the speakers\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Mel set up the charity Cure DHDDS after finding out that two of her three children carried an ultra-rare and newly discovered DHDDS genetic mutation which causes a progressive metabolic disorder. \nMel soon realised that there was limited support and research available on the condition\, so with her husband Charlie Dixon founded the charity Cure DHDDS.  \nMel now works full time for this charity\, supporting families and driving research in the hope of expediting a treatment. Mel is also a member of the Genomics England Participant Panel\, CDG UK\, The LSD collaborative and UKRET (UK Rare Epilepsy’s Together). \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Megan joined Beacon in January 2025 as our Senior Scientific Projects Officer. Before joining Beacon\, she completed her Masters by Research and PhD at the University of Birmingham\, studying Human Papillomavirus (HPV) driven cancers. \nMegan then went on to work at the Francis Crick Institute as a postdoctoral researcher\, carrying out lab based research whilst also getting involved in public engagement and outreach activities.  With over 8 years of research experience\, Megan has worked with a range of clinical and non-clinical academics and researchers within universities and biomedical research institutes. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n  María Laura is the Scientific Director of the Ramón y Cajal Health Research Institute (IRYCIS) and a leading figure in biomarker research and translational medicine. \nShe serves as Chair of the Biomarkers Platform at EATRIS and National Scientific Director of EATRIS Spain\, coordinating a network of 33 accredited health research institutes. María Laura brings extensive experience in cancer and kidney disease research as well as multi-omics approaches\, and is actively involved in patient and citizen engagement across Spain and Europe. She is also developing strategies to integrate climate change and health research across Spain\, Europe\, and Latin America. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Join our webinar to confidently build research partnerships and improve care for your community!\n \n \n \n \n \n \n \n \n \n \n \n \n \n Register now\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Please note: the ticket window may take a few seconds to load.  URL:https://www.rarebeacon.org/event/unlocking-research-opportunities-partnering-with-academics/ LOCATION:Online via Zoom CATEGORIES:Online,Webinar ATTACH;FMTTYPE=image/jpeg:https://www.rarebeacon.org/wp-content/uploads/2025/02/Academics-webinar-graphic-1.jpg ORGANIZER;CN="Beacon for Rare Diseases":MAILTO:projects@rarebeacon.org END:VEVENT END:VCALENDAR