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:20250330T010000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:+0200 TZOFFSETTO:+0100 TZNAME:CET DTSTART:20251026T010000 END:STANDARD END:VTIMEZONE BEGIN:VEVENT DTSTART;TZID=Europe/Paris:20251023T093000 DTEND;TZID=Europe/Paris:20251023T163000 DTSTAMP:20260514T115702 CREATED:20250617T123659Z LAST-MODIFIED:20251017T100007Z UID:60802-1761211800-1761237000@www.rarebeacon.org SUMMARY:Let's get down to business DESCRIPTION:Big change needs strong foundations\, that’s where sustainability comes in!\n \n \n \n \n \n A business plan is a practical tool that turns your mission into action. It’s a focused\, achievable road-map for your organisation’s future. It can give you the confidence and direction to move forward\, make the most of your time and energy\, and protect the future of your organisation and community. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \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 hands-on workshop will take the fear out of business planning.\n \n \n \n \n \n There’s no jargon\, just practical guidance to help you shape a plan that works for you. With expert speakers who understand the realities of working in rare disease\, you’ll come away with tools\, tips and ideas to help you use your resources wisely and build for the long term. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Why is it important?\n A business plan isn’t just for companies; it’s a valuable tool for any organisation with a mission. It helps you get clear on what you want to achieve\, how you’ll get there\, and what support you’ll need along the way. A good plan can: \n\nKeep everyone focused on what matters most.\nHelp you use your time\, energy\, and resources wisely.\nCommunicate your goals clearly to volunteers\, funders\, and partners.\nTrack your progress and celebrate your wins.\n\nUltimately\, it gives you the structure and confidence to do even more for your rare disease community. \n \n \n \n \n \n \n \n \n \n \n \n Why attend?\n We know you’re busy juggling different roles\, putting out fires\, and working hard for your community. This workshop gives you dedicated time and space to step back and focus on your organisation’s future. \n\nCarve out uninterrupted time to work on your organisation\, not just in it.\nGet guidance from expert speakers who understand the rare disease landscape.\nLeave with a draft plan you can build on and use.\nConnect with others who truly get the challenges and rewards of this work.\n\n \n \n \n \n \n \n \n \n \n \n \n \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 will:\n \n \n \n \n \n \n\nBreak down what a business plan is and why it matters for patient groups in a clear\, accessible way\, without the corporate jargon. \n\n\nExplore how to start measuring your impact\, showing it as a way to recognise your progress and stay on track. \n\n\nGive you space to focus on your own organisation and start building a business plan\, with support and guidance from our expert speakers. \n\n\nOffer the chance to connect with others in the rare disease community\, share experiences\, and learn from each other. \n\n\n \n \n \n \n \n Come with your team!\nA business plan is your organisation’s road map for the future. \nIn this interactive workshop\, you’ll assess where your patient group is right now\, reflect on how your current activities support your mission and vision\, and begin building a practical\, actionable plan for what’s next. \nWe understand that many rare disease leaders work in isolation. However\, if you are part of a team or work closely with other parents\, patients\, trustees or volunteers we encourage you to bring them along to help brainstorm ideas and shape your organisation’s direction together. Collaboration is key\, and we’ll even cover your travel costs (see our expense policy here). \n \n \n \n \n \n Important Notice: Our ticketing provider\, Eventbrite\, now allows you to confirm tickets before completing the order form on the next page. To finalise your booking\, please ensure you fill out the form in full after paying your deposit.  \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 All our speakers have experience in the rare disease community and will be on hand throughout the day to answer questions and provide gudiance. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Rick Thompson\n \n \n \n \n \n \n \n \n \n \n \n CEO\, Beacon for Rare Diseases \n \n \n \n \n \n \n \n \n \n \n \n Flóra Raffai\n \n \n \n \n \n \n \n \n \n \n \n Founder\, Rapport Coaching\, small organisation expert and former Beacon CEO \n \n \n \n \n \n \n \n \n \n \n \n Lindsay Weaver\n \n \n \n \n \n \n \n \n \n \n \n Co-CEO\, Realise Advocacy\, former CEO\, MSUK \n \n \n \n \n \n \n \n \n \n \n \n Chloe Joyner\n \n \n \n \n \n \n \n \n \n \n \n Founder\, Usher Kids UK \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \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 at the University of Notre Dame in London. The address is 1-4 Suffolk Street\, London\, SW1Y 4HG\, UK. \nThe closest underground stations are: \n\nCharing Cross Station – 4 minute walk (Bakerloo and Northern lines)\nPiccadilly Circus Station – 5 minutes walk (Piccadilly and Bakerloo lines)\nLeicester Square Station – 8 minutes walk (Piccadilly and Nothern lines)\n\n \n \n \n \n \n Is the venue accessible?\n Yes\, the venue is fully acessible.  \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/lets-get-down-to-business/ LOCATION:Notre Dame London\, 1-4 Suffolk Street\, London\, SW1Y 4HG\, United Kingdom CATEGORIES:In-person,Workshop ATTACH;FMTTYPE=image/jpeg:https://www.rarebeacon.org/wp-content/uploads/2025/06/Facebook-graphic-1.jpg ORGANIZER;CN="Beacon for Rare Diseases":MAILTO:projects@rarebeacon.org END:VEVENT END:VCALENDAR