BEGIN:VCALENDAR VERSION:2.0 PRODID:-//Beacon for rare diseases - ECPv6.18.2//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: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 BEGIN:DAYLIGHT TZOFFSETFROM:+0100 TZOFFSETTO:+0200 TZNAME:CEST DTSTART:20270328T010000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:+0200 TZOFFSETTO:+0100 TZNAME:CET DTSTART:20271031T010000 END:STANDARD BEGIN:DAYLIGHT TZOFFSETFROM:+0100 TZOFFSETTO:+0200 TZNAME:CEST DTSTART:20280326T010000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:+0200 TZOFFSETTO:+0100 TZNAME:CET DTSTART:20281029T010000 END:STANDARD END:VTIMEZONE BEGIN:VEVENT DTSTART;TZID=Europe/Paris:20261111T100000 DTEND;TZID=Europe/Paris:20261111T163000 DTSTAMP:20261019T150437Z CREATED:20260921T142235Z LAST-MODIFIED:20261019T150437Z UID:10000223-1794391200-1794414600@www.rarebeacon.org SUMMARY:Better together: Patient group collaboration DESCRIPTION:Rare Insights Study\nEvents\nNews\nThe Resources Hub\nSubscribe\nBlog\nContact\n\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n About us\n\n Who we are\n Our history\n Who we help\n Meet the team\n Our commitment\n Published work\n Press\n\n\nRare diseases\n\n What are rare diseases?\n Why patient groups matter\n Why we use the term rare disease\n\n\nPatient group training\n\n Our training\n The Resources Hub\n Upcoming training\n \n Mentoring programme 2026-27\n \n\n\n\nRare community\n\n Community building\n Cambridge Showcase 27\n The Student Voice Prize\n Rarely Heard Podcast\n Case studies\n Share your story\n\n\nResearch\n\n Rare disease research\n Drug repurposing\n REMEDi4ALL\n LifeArc Translational Centres for Rare Disease\n MCDS-Therapy\n Social impact bond\n\n\nSupport us\n\n Why support us?\n Individuals\n Volunteers\n Corporates and Trusts\n Our supporters\n Donate\n\n\nDonate\n\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Rare Insights Study\nAbout us\nRare diseases\nPatient group training\nRare community\nResearch\nSupport us\nEvents\nNews\nBlog\nSubscribe\nContact us\nDonate\nCareers\n\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Cambridge Showcase ’27\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n 11/02/2027 18:30 - 21:00 The Clayton Hotel\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n [/et_pb_column]\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n [/et_pb_section]\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.  \n \n \n \n \n \n \n\n\n\n\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Also coming up…\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Better together: Patient group collaborationBetter together: Patient group collaboration11/11/202610:00-16:30 Lynton House In-person\, WorkshopJoin us in London to explore the opportunities and value of patient group collaboration and hear from the people doing it! More Info Building stronger partnerships with industryBuilding stronger partnerships with industry02/12/202610:00-16:30 The Royal Institution In-person\, WorkshopA workshop for rare disease patient groups and industry partners who want to build stronger\, more equal partnerships. More Info Cambridge Showcase ’27Cambridge Showcase ’2711/02/202718:30-21:00 The Clayton Hotel In-person\, ShowcaseGet ready for an engaging evening as the Cambridge Rare Disease Showcase returns for 2027! Join us for an evening dedicated to building community\, exc... More Info REMEDi4ALL Repurposing Bootcamp for Patient RepresentativesREMEDi4ALL Repurposing Bootcamp for Patient Representatives10/06/2027 - 11/06/202708:00 - 17:00 Hotel SB BCN Events Castelldefels\, Barcelona\, Spain In-person\, WorkshopThe REMEDi4ALL Repurposing Bootcamp is a specialised training programme designed to empower patient representatives with the essential knowledge and t... More Info iDR27: Further\, TogetheriDR27: Further\, Together15/06/2027 - 16/06/202708:00 - 17:00 11 Cavendish Square Conference\, In-personJoin the leading international drug repurposing conference by REMEDi4ALL and Beacon for Rare Diseases to explore how we can move promising science\, id... More Info \n \n \n \n \n \n \n \n\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Connect with us:\n \n \n \n \n \n \n \n \n \n \n \n FollowFollowFollowFollowFollow\n \n \n \n \n \n \n \n Donate\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Contact\n \n Privacy Policy\n \n Cookie Policy\n \n Reachdeck\n \n \n \n \n \n \n \n Events\n \n Subscribe\n \n Resources Hub\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Charity registration number: 1149646  |  Company registration number: 8174973 \nBeacon: for rare diseases\, 66 Devonshire Road\, Cambridge\, United Kingdom\, CB1 2BL \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Connect with us:\n \n \n \n \n \n FollowFollowFollowFollowFollow\n \n Donate\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Contact\n \n Privacy Policy\n \n Reachdeck\n \n Events\n \n Subscribe\n \n Resources Hub\n \n \n \n \n \n \n \n \n \n \n \n Beacon: for rare diseases  |  Charity registration number: 1149646  |  Company registration number: 8174973 \n66 Devonshire Road\, Cambridge\, United Kingdom\, CB1 2BL \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Key details\n \n \n \n \n \n \n \n \n \n \n \n \n \n Time 18:30 - 21:00 UTC+1\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Organizer Email projects@rarebeacon.org\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Location Cambridge\, \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Add To Calendar Google Calendar Apple Calendar Export .ics file Outlook Live Outlook 360 \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Key details:\n \n \n \n \n \n \n \n \n \n \n \n \n \n Time 18:30 - 21:00 UTC+1\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Organizer Email projects@rarebeacon.org\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Location Cambridge\, URL:https://www.rarebeacon.org/event/better-together-patient-group-collaboration/ LOCATION:Lynton House\, Lynton House\, 7-12 Tavistock Square\, London\, WC1H 9LT CATEGORIES:In-person,Workshop ATTACH;FMTTYPE=image/png:https://www.rarebeacon.org/wp-content/uploads/2026/09/LifeArc-Collab-ws-EB-size-1800-x-1800-px.png ORGANIZER;CN="Beacon for Rare Diseases":MAILTO:projects@rarebeacon.org END:VEVENT BEGIN:VEVENT DTSTART;TZID=Europe/Paris:20261202T100000 DTEND;TZID=Europe/Paris:20261202T163000 DTSTAMP:20261006T150239Z CREATED:20260928T135448Z LAST-MODIFIED:20261006T150239Z UID:10000224-1796205600-1796229000@www.rarebeacon.org SUMMARY:Building stronger partnerships with industry DESCRIPTION:What comes to mind when you hear ‘partner with industry’?\n \n \n \n \n \n Are you… Curious? Optimistic? Cautious? Unsure?\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n For rare disease patient groups\, industry can be a vital partner in driving progress. \nCompanies develop treatments and invest in the research the community needs. Beyond research\, they can also help groups raise awareness\, influence policy and achieve their wider advocacy goals. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n For industry\, patient groups offer a direct line to the people living with the condition. Working closely with them keeps research focused on what patients actually want. These partnerships add real value on both sides. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n This workshop brings patient groups\, industry and other stakeholders together to talk openly about the challenges and the 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 \n \n \n \n \n Why join our workshop?\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n For a small patient group\, working with industry can be daunting. There is a lot to navigate\, from grant portals and contracting to the ABPI Code of Practice\, and it is easy to feel out of your depth. \nYet patient groups know their condition and their community better than anyone. In rare disease\, where data and insight are hard to come by\, that knowledge is exactly what industry needs. \nBoth sides have a lot to gain\, and a lot to learn from each other. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Register for your place here! \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n We’ll look at:\n\nThe different ways patient groups can work with industry\, and where to start\nHow to build trust while staying compliant and managing conflicts of interest\nWhat a good partnership looks like\, and how both sides can set realistic expectations\n\n \n \n \n \n \n What to expect:\n \nA case study from Sue Farrington the Chief Executive of Scleroderma and Raynaud’s UK and her partner at Boehringer Ingelheim discussing their long-standing partnership. Sharing what they achieved\, what they learned and the pitfalls they met along the way.\nTalks from industry on what they look for in a patient group partner\, their priorities and the different ways groups can work with them\nA presentation from Dr Amit Aggarwal from the ABPI on what the Code means in practice\, and the work they are doing to make it more accessible.\nA panel discussion on how industry partnerships have changed over time\, the current landscape and exploring what it takes to build trust\nTime to share your experiences and challenges with other patient groups and stakeholders in an open\, supportive environment.\n\n \n \n \n \n \n You’ll leave with a clearer picture of how industry partnerships work\, practical lessons from groups who have done it\, and new connections across the rare disease community. \n \n \n \n \n \n \n \n \n \n \n \n \n \n Register\n \n \n \n \n \n \n \n \n \n \n \n \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 Sue Farrington\nChief Executive\nScleroderma and Raynaud’s UK \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Dr Amit Aggarwal\n Executive Director for Medical Affairs and Strategic Partnerships\nABPI \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n More speaker announcements coming soon! \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Frequently asked questions\n \n \n \n \n \n Can I bring a carer with me?\n Yes\, any registered delegate is able to bring a carer with them to our training. If you’d like a carer to attend with you\, please choose the free carer ticket in additon to your own during registration.\n \n \n \n \n \n Do you cover travel expenses?\n Beacon will reimburse travel expenses for rare disease patients\, carers\, patient groups and charities\, up to the total value of £100 per person. If your travel is likely to exceed this amount\, please contact projects@rarebeacon.org ahead of the event so we can discuss whether further reimbursement will be possible. \nAll expenses\, other than mileage\, must be accompanied by valid receipts.   \nFor further information on our expenses policy\, please click here.  \n \n \n \n \n \n Where is the workshop? \n This workshop will be held at the Royal Institution\, London. \nThe closest underground stations are:\nGreen Park – 5 mins walk (Jubilee\, Victoria and Piccadilly lines)\nPiccadilly Circus – 10 mins walk (Piccadilly and Bakerloo lines)\nOxford Circus – 10 mins walk (Victoria\, Central and Bakerloo lines) \n \n \n \n \n \n Is the venue accessible?\n Yes\, the venue is fully accessible. \nIf you have any accessibility requirements\, please note these on your registration form so we can ensure your needs are met.\n \n \n \n \n \n Will lunch be provided?\n Lunch and refreshments will be provided throughout the day. \nIf you have dietary requirements\, please let us know in the registration form. \n \n \n \n \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/building-stronger-partnerships-with-industry/ LOCATION:The Royal Institution\, 21 Albemarle Street\, W1S 4BS\, London\, United Kingdom CATEGORIES:In-person,Workshop ATTACH;FMTTYPE=image/png:https://www.rarebeacon.org/wp-content/uploads/2026/09/WS_POST_COL2_Main.png ORGANIZER;CN="Beacon for Rare Diseases":MAILTO:projects@rarebeacon.org END:VEVENT BEGIN:VEVENT DTSTART;TZID=Europe/Paris:20270211T183000 DTEND;TZID=Europe/Paris:20270211T210000 DTSTAMP:20261019T113830Z CREATED:20261019T111401Z LAST-MODIFIED:20261019T113830Z UID:10000227-1802370600-1802379600@www.rarebeacon.org SUMMARY:Cambridge Showcase '27 DESCRIPTION: URL:https://www.rarebeacon.org/rare-showcase/camrareshowcase27/ LOCATION:The Clayton Hotel\, Cambridge CATEGORIES:In-person,Showcase ATTACH;FMTTYPE=image/png:https://www.rarebeacon.org/wp-content/uploads/2026/09/CRDS27-Graphic-SQ.png ORGANIZER;CN="Beacon for Rare Diseases":MAILTO:projects@rarebeacon.org END:VEVENT BEGIN:VEVENT DTSTART;TZID=Europe/Paris:20270610T080000 DTEND;TZID=Europe/Paris:20270611T170000 DTSTAMP:20261005T145800Z CREATED:20260924T090750Z LAST-MODIFIED:20261005T145800Z UID:10000225-1812614400-1812733200@www.rarebeacon.org SUMMARY:REMEDi4ALL Repurposing Bootcamp for Patient Representatives DESCRIPTION: URL:https://remedi4all.org/repurposing-bootcamp-for-patient-representatives-2027/ LOCATION:Hotel SB BCN Events Castelldefels\, Barcelona\, Spain\, Hotel SB BCN Events Ronda de Can Rabadà\, 22-24 08860 Castelldefels\, Barcelona\, Spain CATEGORIES:In-person,Workshop ATTACH;FMTTYPE=image/png:https://www.rarebeacon.org/wp-content/uploads/2026/09/Patient-Bootcamp-2027.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=Europe/Paris:20270615T080000 DTEND;TZID=Europe/Paris:20270616T170000 DTSTAMP:20261014T133506Z CREATED:20261014T133506Z LAST-MODIFIED:20261014T133506Z UID:10000226-1813046400-1813165200@www.rarebeacon.org SUMMARY:iDR27: Further\, Together DESCRIPTION: URL:https://remedi4all.org/2027-international-drug-repurposing-conference/#tickets#new_tab LOCATION:11 Cavendish Square\, United Kingdom CATEGORIES:Conference,In-person ATTACH;FMTTYPE=image/jpeg:https://www.rarebeacon.org/wp-content/uploads/2026/10/IDR27-launch-graphic.jpg ORGANIZER;CN="Beacon for Rare Diseases":MAILTO:projects@rarebeacon.org END:VEVENT END:VCALENDAR