BEGIN:VCALENDAR VERSION:2.0 PRODID:-//wp-events-plugin.com//7.2.3.1//EN TZID:Europe/Amsterdam X-WR-TIMEZONE:Europe/Amsterdam BEGIN:VEVENT UID:8@vhl-europa.org DTSTART;TZID=Europe/Amsterdam;VALUE=DATE:20241019 DTEND;TZID=Europe/Amsterdam;VALUE=DATE:20241021 DTSTAMP:20241125T134659Z URL:https://vhl-europa.org/events/meeting-report-vhl-international-medical -research-conference-19-20-october-2024-milan-italy/ SUMMARY:Meeting Report: VHL International Medical Research Conference\, 19- 20 October 2024\, Milan\, Italy DESCRIPTION:Our journey to Milan for the VHL International Medical Research Conference began on a rainy Friday\, 18 October. A public transport strik e made for a complicated arrival\, we finally got to the hotel across town . We held our Annual General Assembly for VHL in the hotel in the evening of October 18th\, 2024\, with members from Italy\, Germany\, Hungary\, Den mark\, France\, and the Netherlands in person\, and with other participant s joining online from Germany\, France\, the Netherlands. \n\nDay 1 High lights\n\nRNA Interference and belzutifan in Kidney Cancer Research: Dr. J im Brugarolas from the University of Texas Southwestern Medical Center in the USA presented a study on a new drug\, ARO-HIF2\, designed to block can cer-related genes associated with clear cell renal cell carcinoma (ccRCC). The study showed some promise\, though neurotoxicity and limited response rates highlighted areas for improvement. Additionally\, Dr. Brugarolas pr ovided updates on the ongoing development of belzutifan\, including the us e of a PET scan tracer to better monitor its effects in patients. \n\nRadi otherapy as an Option for VHL Kidney Tumours: Dr. Rachel van Leeuwaarde (U niversity Medical Center Utrecht\, the Netherlands) discussed the potentia l of radiotherapy\, specifically MR-LINAC\, for VHL-related kidney tumours . This non-invasive\, possibly cost-effective approach offers promise for patients unable to undergo surgery\, particularly those with larger tumour s. \n\nGene Therapy and Neural Crest Cells in VHL: PhD candidate Pedram Mo eini (University of Navarra\, Spain) shared early findings on gene therapy using AAV vectors in kidney cancer cells\, an approach with potential for long-term gene-based treatments for VHL. Meanwhile\, Dr. Betty Gardie fro m Nantes University Hospital\, France\, discussed her research on neural c rest cells and their link to VHL manifestations\, raising the possibility that VHL may be classified as a “neurocristopathy.” \n\nIn a new featu re at the conference\, two young doctors pursuing their PhDs in VHL presen ted some challenging patient cases. Dr. Saya Ahmad from UMC Utrecht and Dr . Lucia Solerno from San Raffaele Hospital in Milan (who also spent severa l months working with the VHL team at UMC Utrecht) shared unique cases. Th ey engaged a panel of experts to consider the best treatment options for t hese patients\, creating a lively and interactive session that encouraged the audience to think along and ask questions! \n\nDay 2 Highlights\n\nHis torical and Clinical Perspectives on VHL: Dr. Ram Srinivasan (National Can cer Institute\, USA) presented a historical look at VHL treatment\, from e arly kidney surgery practices to today’s nephron-sparing techniques. He also detailed developments since the VHL gene was identified in 1993\, inc luding the work on belzutifan\, which has shown promise in stabilising tum our growth and reducing the need for surgeries\, though it awaits approval from the European Medicines Agency (EMA). \n\nMolecular and Genetic Insig hts into VHL-Related Tumours: Prof. Sakari Vanharanta (University of Helsi nki\, Finland) presented research on the role of the PAX8 gene in kidney c ancer\, showing how it drives tumour growth when combined with specific mu tations in ccRCC. Meanwhile\, Prof. Ian Frew (University of Freiburg\, Ger many) explored differences in VHL mutations in males and females\, and Pro f. Ruhe Dere from Baylor College of Medicine (Houston\, Texas\, USA) discu ssed the interplay between SETD2 and VHL genes in cell division\, potentia lly affecting tumour formation. Prof Tien Hsu (National Central University \, Taiwan) team presented data that we shouldn’t only focus on treating the tumour itself\, but RCC can also be approached by treating the endothe lial vascular cells\, and it goes beyond VEGF\, through another protein\, Oncostatin M. \n\nAdvances in Retinal Capillary Haemangioma: Dr. Shizuo Mu kai (Mass General Brigham Hospital\, USA)\, an eye surgeon specialising in VHL\, discussed advancements in treating retinal capillary haemangioma. D r. Mukai discussed the value of early diagnosis and prompt treatment to pr event blindness. For patients with ocular symptoms alone\, he advised agai nst systemic treatments like belzutifan\, recommending targeted eye care b y experienced retinal specialists instead. \n\nAdvocacy and Support for VH L Patients in Europe: Dr. Rachel Giles\, President of VHL Europa\, highlig hted the ongoing needs of European VHL patients\, especially regarding acc ess to belzutifan\, which remains unavailable in many countries outside cl inical trials or managed access programs. She also pointed to the unique p sychosocial challenges young adults with VHL face and noted initiatives to map these needs. Janet Thompson of the VHL Alliance shared an overview of alliance activities supporting the VHL community and expanding resources for patients. \n\nThe conference hosted over 450 medical researchers and m edical students. The steady progress in VHL research was wonderful to see\ , although addressing the challenges that remain for patients and healthca re providers alike are still substantial tasks. \n\nAfter the conference\, we headed to the airport\, only to discover that all flights in Northern Italy had been cancelled. Arrangements had to be made for another night in Milan\, and after sorting out hotels and flights home the next day\, we s ettled in to enjoy one more evening in the city. A hassle\, to be sure\, b ut ultimately a lovely\, unexpected night in Milan! END:VEVENT BEGIN:VTIMEZONE TZID:Europe/Amsterdam X-LIC-LOCATION:Europe/Amsterdam BEGIN:DAYLIGHT DTSTART:20240331T030000 TZOFFSETFROM:+0100 TZOFFSETTO:+0200 TZNAME:CEST END:DAYLIGHT END:VTIMEZONE END:VCALENDAR