BEGIN:VCALENDAR VERSION:2.0 PRODID:-//The ED Society - ECPv6.15.17.1//NONSGML v1.0//EN CALSCALE:GREGORIAN METHOD:PUBLISH X-ORIGINAL-URL:https://edsociety.co.uk X-WR-CALDESC:Events for The ED Society REFRESH-INTERVAL;VALUE=DURATION:PT1H X-Robots-Tag:noindex X-PUBLISHED-TTL:PT1H BEGIN:VTIMEZONE TZID:UTC BEGIN:STANDARD TZOFFSETFROM:+0000 TZOFFSETTO:+0000 TZNAME:UTC DTSTART:20230101T000000 END:STANDARD END:VTIMEZONE BEGIN:VEVENT DTSTART;TZID=UTC:20251206T110000 DTEND;TZID=UTC:20251206T160000 DTSTAMP:20260417T193637 CREATED:20250926T122419Z LAST-MODIFIED:20251106T151511Z UID:15056-1765018800-1765036800@edsociety.co.uk SUMMARY:ED Christmas Party 2025 DESCRIPTION:The ED Christmas Party 2025\nWe’re so excited to announce that our Annual ED Christmas Party is back — and we’d love you to join us! \n📅 Date: Saturday 6th December 2025\, 11am – 4pm📍 Venue: Hatherley Manor Hotel & Spa\, Cheltenham \nThis is our favourite event of the year — a magical day where families from across the ED community come together to celebrate\, connect\, and create lasting memories. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \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’s New This Year?\n\nWe’re excited to welcome Non Stop Kids Entertainment this year\, bringing fresh fun and festive energy to the day\, including: \n\nMini Disco to kick off the celebrations\nAn award-winning Christmas-themed comedy magic show\nParty games.\n\nPlus: \n\n\nMad Hattie is back with her glittery face-painting magic (she loves us so much she never leaves!)\nCraft table bursting with glitter\, glue\, and creativity\nCatch Up & Connect – Chat with the ED Society team\nMeet members of our Medical Advisory Board — a rare chance to ask questions\, share concerns\, and get expert advice\nA Feast to Enjoy – Delicious buffet lunch\, plus cake\, tea\, and coffee — all included in your ticket\nExciting ED Tombola – fantastic prizes kindly donated by local businesses and our generous supporters\nA Magical Ending – Santa arrives with gifts for every child\, and there is cake to go round.\n\nWhy Join Us?\nThis day is about more than festive fun — it’s about celebrating our ED community. \nA space where children feel included\, parents can relax\, and families come together with people who truly understand. \nDon’t miss the chance to create lasting memories at this magical event. \nTickets\nTickets are available to buy online now — please see below. (Every ticket includes: entertainment\, buffet lunch\, refreshments\, and a gift from Santa for each child.) URL:https://edsociety.co.uk/event/ed-christmas-party-2025/ LOCATION:Hatherley Manor Hotel and Spa\, Down Hatherley Ln\, Gloucester\, England\, GL2 9QA ORGANIZER;CN="The ED Society":MAILTO:danielle@edsociety.co.uk END:VEVENT BEGIN:VEVENT DTSTART;TZID=UTC:20250612T090000 DTEND;TZID=UTC:20250612T160000 DTSTAMP:20260417T193637 CREATED:20240718T131342Z LAST-MODIFIED:20250604T095551Z UID:11775-1749718800-1749744000@edsociety.co.uk SUMMARY:Family Day at ICED25 DESCRIPTION:We’re excited to invite you to a very special event – our Family Day at the ICED25 Conference! The full programme has now been finalised\, and you can view what is happeneing HERE. \nWhat is ICED?\nICED25 will highlight excellence within the rare disease field\, and prompt discussion\, reflection\, and action. We collaborate with other Ectodermal Dysplasia organisations worldwide dedicated to improving the health and well-being of people affected by the Ectodermal Dysplasias. \n“Our vision: a world in which no one faces their rare disease journey alone.”\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \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 to Expect:\nThis day is exclusively designed for families and parents of individuals affected by ectodermal dysplasia\, and offers a unique opportunity to connect with top medical professionals\, get your questions answered\, and be part of a supportive community. \nBeyond the educational aspect\, it’s also a wonderful opportunity to connect and build meaningful friendships with others who share your journey. \n“Our team prides itself on delivering our vision that makes everyone feel welcome and heard.”\nOn the day:\n\nEngage with Experts: The Medical Advisory Board (MAB) and invited medical specialists will        be on hand to provide invaluable insights and answer all your questions about ED.\nInteractive Q&A Sessions: Gain deeper understanding and perspective on ectodermal                 dysplasia from experts in the field.\nBuild Connections: Meet other families who share your journey and build meaningful                 relationships.\nRefreshments Provided: Enjoy tea\, coffee\, pastries\, and a buffet lunch during the day.\n\nEvent Details:\n\nWho Can Attend: Family members aged 16 and above (please note\, there are no childcare         facilities available)\nCost: £30 per adult (to include refreshments\, lunch\, and access to all the sessions.)\nDate & Time: Thursday 12th June 2025\, 9am – 4pm\nLocation: Austin Court\, 80 Cambridge St\, Birmingham\, B1 2NP\n\n To make the most of the presentations\, please send us any questions you have in advance. Please email Diana Perry. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Useful Links\nFull Programme for Family Day \nICED25 Brochure \nWhat’s On In Birmingham \nICED25 Press Release Feb 2025 \nICED25 Invitation URL:https://edsociety.co.uk/event/family-day-at-iced25/ LOCATION:Austin Court\, 80 Cambridge St\, Birmingham\, B1 2NP\, United Kingdom ORGANIZER;CN="The ED Society":MAILTO:danielle@edsociety.co.uk END:VEVENT BEGIN:VEVENT DTSTART;VALUE=DATE:20250610 DTEND;VALUE=DATE:20250613 DTSTAMP:20260417T193637 CREATED:20240719T132708Z LAST-MODIFIED:20250610T082906Z UID:11813-1749513600-1749772799@edsociety.co.uk SUMMARY:ICED25 - 9th International Conference for Ectodermal Dysplasia DESCRIPTION:Official Sponsors of ICED25\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n\nSimon Lees-Jones\, ED Society UK Member\nEuropean Donor\n\n  \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Full Programme Now Availiable HERE\nWhat is ICED?\nIn 2004\, the UK hosted the ECTO4\, a significant milestone as one of the initial International Conferences on ectodermal dysplasia. These conferences have since become a recurring event in Europe\, taking place every three years. It is with great honour and pride that we are now announcing our role as hosts for the 9th Conference\, ICED25\, to be held in Birmingham on 10th – 12th June 2025. \nICED25 will highlight excellence within the rare disease field\, and prompt discussion\, reflection\, and action. We collaborate with other Ectodermal Dysplasia organisations worldwide dedicated to improving the health and well-being of people affected by the Ectodermal Dysplasias. \n“Our vision: a world in which no one faces their rare disease journey alone.”\nCPD Accreditation for ICED25 – We are pleased to announce that this conference has been accredited by Continuing Professional Development (CPD). \nAll medical professionals in attendance will receive a Certificate of Attendance\, contributing to their CPD points. This accreditation supports ongoing professional growth\, enabling attendees to enhance their skills\, expand their knowledge\, and stay up to date with the latest research and advancements in the field. \nPlease join us and take advantage of this opportunity to advance your professional development\, while engaging with leading experts in ectodermal dysplasia research and care. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n “Our team prides itself on delivering our vision that makes everyone feel welcome and heard.”\nWhat can you expect? \nThe first two days of the ICED25 Conference are for medical professionals only – World class speakers have accepted an invitation to present their research\, including an update on the first recombinant protein therapy being developed for patients with the most common form of ectodermal dysplasia – XLHED. \nThe third day (12th June) is our “Family Day”\, exclusively for individuals affected and parents\, providing a unique chance to delve deeper into the world of ED with the medical professionals in attendance. (Medical Professionals are encouraged to also attend this day.) \nThis day will offer a valuable platform to have our families questions answered\, and will feature interactive Q&A sessions covering all aspects of ectodermal dysplasia. Beyond the educational aspect\, it’s also a wonderful opportunity for them to connect and build meaningful friendships with others who share their journey. \nBuilding upon the success of previous conferences in London (2004)\, Copenhagen (2006)\, Norway (2015)\, Spain (2018)\, and Paris (2022)\, ICED25 will bring together paediatricians\, dentists\, scientists\, dermatologists\, ear\, nose and throat specialists\, geneticists\, oral and maxillo-facial surgeons\, ophthalmologists\, experts in child development and other specialists to discuss the challenges of ectodermal dysplasia and the latest advances in research. \nBy working in partnership with patient organisations and professionals\, we are breaking the isolation felt by those living with ectodermal dysplasia\, uniting all into a single unified force. \n\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Where to stay?\nPremier Inn\, City Centre\, Broad Street\, Birmingham. \nPremier Inn\, City Centre\, Bridge Street\, Birmingham. \nHampton by Hilton – When making a booking\, use Special Rates tab and addCorporate Account number 3451905 \nLeonardo Royal Hotel – rooms can be booked online with a 15% discount \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Useful Links\nFull Programme for ICED25 \nICED25 Brochure \nWhat’s On In Birmingham \nICED25 Press Release Feb 2025 \nFull session and presentation list \nICED25 Invitation \n \n \n \n \n \n \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 us to discuss the availability of Travel Grants. \n We are also offering discounted tickets for Medical & Dental Students/Trainees. *Please provide placement/location details when requesting discounted tickets* \nEarly bird registration of £130 for Medical and Dental professionals on day one and day two\, if booked before Tuesday 1st April 2025. \n Please see ticket options below. \n \n \n \n \n \n Please email any questions to diana@edsociety.co.uk URL:https://edsociety.co.uk/event/iced25-9th-international-conference-for-ectodermal-dysplasia/ LOCATION:Austin Court\, 80 Cambridge St\, Birmingham\, B1 2NP\, United Kingdom ORGANIZER;CN="The ED Society":MAILTO:danielle@edsociety.co.uk END:VEVENT BEGIN:VEVENT DTSTART;TZID=UTC:20241207T110000 DTEND;TZID=UTC:20241207T160000 DTSTAMP:20260417T193637 CREATED:20240719T143232Z LAST-MODIFIED:20241009T104850Z UID:11855-1733569200-1733587200@edsociety.co.uk SUMMARY:ED Christmas Party 2024 DESCRIPTION:We are thrilled to announce that our beloved ED Christmas party is making a triumphant return this year! \nMark your calendars for Saturday\, 7th December 2024\, as we gather once again to celebrate at the stunning Hatherley Manor in Cheltenham. \nLast year’s celebration was a tremendous success\, filled with joy and camaraderie as we gathered together. We raised an impressive £1060 thanks to your generosity and participation in our tombola\, raffle\, and merchandise sales. Your support makes a direct impact on our ED community\, and we couldn’t be more grateful. \n\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \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 year promises even more excitement: \n\nJuggling John is back with his incredible fire-breathing skills\, magic tricks\, and acts!\nHattie will be dazzling us with her fantastic face-painting skills.\nOur successful tombola returns with even more great prizes.\nYou can meet members of our MAB to get advice and have your questions answered.\nMake new friends and catch up with familiar faces.\nWe’ll gather all the children together for fun activities\, and there may even be a special appearance by Father Christmas himself!\n\nJoin us for an unforgettable day of fun\, friendship\, and festive cheer. Don’t miss out on the chance to share your stories and make new memories together. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n In the meantime\, why not check out the photo gallery from previous year’s parties here. \nYour Input Matters: We want our Christmas party to be a highlight for everyone. We always strive to keep our party a success\, and we want our ED families to be happy and to come back year after year. Let us know what you’d like to see this year to make it even more special. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \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 email your thoughts and any suggestions you may have to danielle@edsociety.co.uk \nWe can’t wait to celebrate the season with our incredible ED community. Let’s make this year’s party another unforgettable event! URL:https://edsociety.co.uk/event/ed-christmas-party-2024/ LOCATION:Hatherley Manor Hotel and Spa\, Down Hatherley Ln\, Gloucester\, England\, GL2 9QA ORGANIZER;CN="The ED Society":MAILTO:danielle@edsociety.co.uk END:VEVENT END:VCALENDAR