BEGIN:VCALENDAR VERSION:2.0 PRODID:-//Beacon for rare diseases - ECPv6.10.3//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 END:VTIMEZONE BEGIN:VEVENT DTSTART;TZID=Europe/Paris:20241212T110000 DTEND;TZID=Europe/Paris:20250123T123000 DTSTAMP:20260427T072511 CREATED:20241029T163801Z LAST-MODIFIED:20250128T122413Z UID:59166-1734001200-1737635400@www.rarebeacon.org SUMMARY:Empowering patient groups in rare disease research funding DESCRIPTION:Join our webinar series to explore the rare disease research funding landscape and discover how patient groups can make a real impact.\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 \n \n \n \n \n \n \n \n \n \n \n \n With 80% of rare conditions still lacking approved treatments\, accelerating research progress is a top priority for many patient organisations. \nFunding is essential to drive these efforts\, and with funders now prioritisng the use of real-world evidence in applications\, patient groups have an even greater opportunity to make a meaningful impact. \nNavigating the complexities of research funding can be challenging. That’s why we’ve developed this two-part webinar series to explore the current funding landscape and show how patient groups can add significant value to research applications. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n What to expect from the series\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Part one: Navigating the funding landscape for rare disease research\nThursday 12th December\, 11:00 – 12:30 GMT \n \n \n \n \n \n The first session will offer an overview of the research funding environment\, exploring the types of research projects patient groups can support and who the key funders are. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n In this session\, you’ll learn about:\n \n \n \n \n \n \nThe types of research you could support\, beyond just clinical trials.\n\n\nThe different funding streams available\, from government bodies to commercial funding from industry.\n\n\nThe opportunities and limitations associated with each funding stream.\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 our session one speaker!\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 Toni Mathieson has been the CEO of Niemann-Pick UK (NPUK) since 2005\, bringing personal insight as a parent of three children with Niemann-Pick type C\, and a professional background in marketing and HR. \nWith 20 years of patient advocacy experience\, Toni has worked with 28 patient groups across 21 countries\, is a founding Director of the International Niemann-Pick Disease Registry\, chair of the UK Lysosomal Storage Disorders Patient Collaborative\, and a Patient Public Voice member with NHS England. \n \n \n \n \n \n \n \n \n \n \n \n \n \n Watch Part one\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 \n \n \n \n \n \n \n \n \n Part two: Influencing funding success: How patient groups shape applications\nThursday 23rd January 2025\, 11:00 – 12:30 GMT \n \n \n \n \n \n This session will focus on how patient groups can enhance the impact of funding applications. With more funders prioritising patient involvement and real-world evidence\, we’ll explore how your group can collaborate with researchers to make stronger\, more competitive applications. \n \n \n \n \n \n In this session\, you’ll learn:\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \nHow patient insights can diversify academic ideas and strengthen grant applications.\n\n\nPractical ways to support researchers with patient engagement requirements.\n\n\nWhat steps you can take now to ensure your group is ready to contribute meaningfully to research applications.\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 our session two 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 Dr Catriona Manville is the Director of Research Policy at the Association of Medical Research Charities (AMRC).  The AMRC is a membership organisation dedicated to supporting medical research charities in saving and improving lives through research and innovation. \nCatriona’s team leads on how to fund research\, partnerships between funders and policy issues relating to the research landscape\, in universities and the NHS. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Watch Part two\n \n \n \n \n \n \n \n \n \n \n \n Katie Waller is Head of Patient Programmes at The Lily Foundation\, the UK’s largest mitochondrial disease (mito) charity.  \nKatie is a qualified children’s nurse with experience working on early phase clinical trials with people with rare genetic muscle diseases. She is passionate about the importance of including the patient perspective in research design and delivery\, and is a proud advocate for the Mito community on a National and International level.\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 Who is this webinar for?\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n This webinar series will be particularly useful for rare disease patient groups already working with academic teams or research project leads. \nPatient groups wanting to enhance their understanding of the funding landscape are welcome to join too! \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 \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. If you have difficulties\, you can register directly here.  \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 Please note: the ticket window may take a few seconds to load. If you experience difficulties\, you can register directly here.  URL:https://www.rarebeacon.org/event/engaging-with-fundraising-for-research/ LOCATION:Online via Zoom CATEGORIES:Online,Webinar ATTACH;FMTTYPE=image/jpeg:https://www.rarebeacon.org/wp-content/uploads/2024/10/Accessing-funding-for-research-3.jpg ORGANIZER;CN="Beacon for Rare Diseases":MAILTO:projects@rarebeacon.org END:VEVENT END:VCALENDAR