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X-WR-CALDESC:Events for Arthurs Quest
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DTSTART;VALUE=DATE:20241022
DTEND;VALUE=DATE:20241026
DTSTAMP:20260430T154850
CREATED:20240226T142714Z
LAST-MODIFIED:20240226T142940Z
UID:852-1729555200-1729900799@slc6a1connectuk-aq.org
SUMMARY:The World Orphan Drug Congress 2024
DESCRIPTION:THE MOST IMPORTANT ORPHAN DRUG EVENT WORLDWIDE\nThe World Orphan Drug Congress is an award-winning event with an exhibition that has grown to become the largest and most established orphan drugs & rare diseases meeting of its kind across the globe.Following a record attendance in 2023 of 1500+ attendees\, the World Orphan Drug Congress will be back in October 2024 bringing together the most senior and informed industry experts across the entire orphan drug and rare disease landscape.​ \nWe will continue to cover orphan drug progress in: \nCell & Gene Therapy \nGene Testing \nMarket Access \nEpidemiology & Forecasting \nReal World Evidence \nGlobal Patient Advocacy \nOrphan Drugs Policy \nand more \nFrom basic research to commercial manufacture\, this one meeting covers the​ whole orphan drugs value chain where science\, government and manufacturers all​ come together to create ground- breaking progress.​If you are involved in orphan drugs & ATMP\, this is the​ most important meeting you will be part of in 2024.​ \nHOW TO GET THERE\nHow to get there – Guest Events (firabarcelona.com) \n\nDONATE
URL:https://slc6a1connectuk-aq.org/event/world-orphan-drug-congress-2024/
LOCATION:Fira de Barcelona – Montjuïc – Hall 2\, C/ de Lleida\, 4\, (Entrance off Lleida Street)\, Barcelona\, Select a State:\, 08004\, Spain
ATTACH;FMTTYPE=image/jpeg:https://slc6a1connectuk-aq.org/wp-content/uploads/2024/02/orphan-drug-congress-24.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20241204
DTEND;VALUE=DATE:20241206
DTSTAMP:20260430T154850
CREATED:20240226T143217Z
LAST-MODIFIED:20240226T143217Z
UID:858-1733270400-1733443199@slc6a1connectuk-aq.org
SUMMARY:SLC6A1connect symposium 2024
DESCRIPTION:Details TBC soon\n\n\nDONATE
URL:https://slc6a1connectuk-aq.org/event/slc6a1connect-symposium-2024/
ATTACH;FMTTYPE=image/jpeg:https://slc6a1connectuk-aq.org/wp-content/uploads/2023/09/SLC6A1connect_symposium.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20241206
DTEND;VALUE=DATE:20241211
DTSTAMP:20260430T154850
CREATED:20240226T144851Z
LAST-MODIFIED:20240226T144851Z
UID:860-1733443200-1733875199@slc6a1connectuk-aq.org
SUMMARY:AES Annual Meeting 2024
DESCRIPTION:Join us in Los Angeles this December for the best in epilepsy education\, science\, and networking! \nThe AES Annual Meeting brings together healthcare providers\, scientists\, advocates\, industry\, and other professionals dedicated to better outcomes for people with epilepsy. \nInformation about AES 2024 will be available soon. Sign up here to receive an email notification when registration opens! \nThe AES Annual Meeting is the premier event for healthcare providers\, scientists\, advocates\, industry\, and other professionals dedicated to better outcomes for people with epilepsy. \nThe meeting boasts five days of top-notch live educational content\, cutting-edge science\, new tools and technologies\, and energy and community you won’t find anywhere else. \n\n\nDONATE
URL:https://slc6a1connectuk-aq.org/event/aes-annual-meeting-2024/
ATTACH;FMTTYPE=image/jpeg:https://slc6a1connectuk-aq.org/wp-content/uploads/2024/02/AES2024.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20250829
DTEND;VALUE=DATE:20250830
DTSTAMP:20260430T154850
CREATED:20250318T113120Z
LAST-MODIFIED:20250821T120257Z
UID:1115-1756425600-1756511999@slc6a1connectuk-aq.org
SUMMARY:SLC6A1 Europe 2025 Inaugural Scientific Symposium and Family Conference
DESCRIPTION:Welcome to the INAUGURAL EUROPEAN SYMPOSIUM SLC6A1! Join us for an exciting in-person gathering at Hotel Vila Galé Ópera. This symposium is a fantastic opportunity to delve into the latest research and advancements in SLC6A1 related disorders. Connect with fellow professionals\, share insights\, and collaborate on potential treatments and ground breaking ideas. Engagement with families affected by SLC6A1 in the family room and Rare Reception will offer greater understanding and insight in to the disease phenotype and the unmet needs of this community\, as well as amplifying the patient voice. Don’t miss out on this unique event! \nThere will be two presentation rooms at the event\, a family room and a scientific room. \n\nThe family room will present research and scientific projects in a way that is broken down into less scientific jargon\, so that it is more accessible to the family community.\nThe scientific room will allow researchers and alike to really showcase their projects in greater detail to a multidisciplinary audience\, offering rich opportunity for further sharing\, collaboration and partnership. Ultimately aiming to push boundaries and change lives for the SLC6A1 community.\nFamilies are invited to attend a family bonding day on August 28th\, starting out at the event hotel at 10am. The symposium team will facilitate the initial meeting\, encouraging families to take up this unique opportunity to meeting and build lasting relationships with other families that have experienced exactly the experiences as eachother. Learn\, share and support eachother.\nChildren are also welcome at the event\, although we understand some may find the environment of the symposium a challenge (or just plain boring!). Once you have made some connections\, you are free to explore what Portugal has to offer and venture out together. There is a large park near the hotel.\nJoin us for a Rare Reception in or close to the symposium venue. Offering a unique opportunity for families and professionals to unwind\, mingle and get to know each other\, learn from each other and foster collaboration in a fun and relaxed atmosphere.\n\n\nScientific registration is for :\n1 day – 8.00am to 5.00pm \nIncludes light breakfast of pastries\, hot and cold drinks\, lunch\, coffee breaks\, and full agenda of scientific presentations and networking opportunities\, plus the chance to meet families affected by SLC6A1 \n– \nFamily Registration is for:\n2 days \nFamilies are invited to attend on the 28th August for an informal day of meeting other families and bonding. Some families will bring their SLC6A1 loved ones with them\, others will leave them at home\, and everyone is welcome. \n29th is the family conference which includes: \n8.00am to 5.00pm conference \nIncludes light breakfast of pastries\, hot and cold drinks\, lunch\, coffee breaks\, and full agenda of scientific information presented in an accessible way for the patient community. Opportunities to mingle with other families\, ask questions and meet the experts trying to navigate the way to therapies for our loved ones\, that address the unmet needs of SLC6A1 related disorders. \nThere will be an accessible respite room for families to take breaks in throughout the day as needed. \n– \nBook Your Room:\n25 rooms are available at the hotel. \nClick here to view available options. \n– \nRare Reception:\nDrinks reception 5pm to late\, venue tbc. \nRegister your interest in attending this Rare Reception in or close to the symposium venue. Offering a unique opportunity for families and professionals to unwind\, mingle and get to know each other\, learn from each other and foster collaboration in a fun and relaxed atmosphere. \nFREE \nSCIENTIFIC REGISTRATIONFAMILY REGISTRATIONBOOK YOUR ROOMRARE RECEPTION
URL:https://slc6a1connectuk-aq.org/event/slc6a1-euro-2025-symposium-and-family-conference/
LOCATION:Vila Gale Opera\, Vila Gale Opera\, Travessa Conde Da Ponte\, Lisbon\,\, Lisbon\, 1300-141\, Portugal
ATTACH;FMTTYPE=image/jpeg:https://slc6a1connectuk-aq.org/wp-content/uploads/2025/03/2025_euro_SLC6A1_EURO_SYMPOSIUM-main_image3.jpg
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20250830
DTEND;VALUE=DATE:20250904
DTSTAMP:20260430T154850
CREATED:20250422T091832Z
LAST-MODIFIED:20250811T144656Z
UID:1196-1756512000-1756943999@slc6a1connectuk-aq.org
SUMMARY:36th International Epilepsy Congress
DESCRIPTION:This event will showcase the best in current knowledge and developments in the epilepsy world. \nSLC6A1 Special Interest Session is bright and early\, 8am to 9.30am Monday 1st September. \nSpecial Interest Session 3\nSession title: Epilepsy and neurodevelopmental comorbidities of SLC6A1-related disorders \nChair: Vincenzo Crunelli (United Kingdom) \nParenting siblings with SLC6A1 mutations and strategy of patient organisations – Lindsay Randall (United Kingdom) \nFrom genotype to protein structure to phenotype in SLC6A1-related disorders – Dennis Lal (USA) \nNon-seizure characteristics of SLC6A1-related neurodevelopmental disorders – Katrine Marie Johannesen (Denmark) \nSLC6A1 function in health and disease using GABASnFR – Chris Dulla (USA) \nTargeting astrocytic GAT1 dysfunction rescues absence seizures and their comorbidities – Tatiana Morais (Portugal) \nRegister for the event here: \nhttps://www.ilae.org/congresses/36th-international-epilepsy-congress/section/sectionid/3 \nSCIENTIFIC REGISTRATION
URL:https://slc6a1connectuk-aq.org/event/36th-international-epilepsy-congress/
LOCATION:Lisbon\, 36th International Epilepsy Congress\, Lisbon\, Portugal
ATTACH;FMTTYPE=image/jpeg:https://slc6a1connectuk-aq.org/wp-content/uploads/2025/04/36th_International_Epilepsy_Congress-2.jpg
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20250907
DTEND;VALUE=DATE:20250908
DTSTAMP:20260430T154850
CREATED:20250811T145118Z
LAST-MODIFIED:20250812T140540Z
UID:1347-1757203200-1757289599@slc6a1connectuk-aq.org
SUMMARY:Dragon Boat Race 2025
DESCRIPTION:This year Arthur’s Quest has teamed up with friend and supporter Gavin Boyce\, who is also supporting the Carly Heart Trust and slc6a1 connect uk after a close shave with the other side many years ago. Thanks to advanced technology\, his ticker is kept on track by an internal defibrillator. We will be sharing our boat and proceeds from this high speed thrill ride of a fundraiser. \nSupport us with sponsorship\, and join us on the day at: \nTonbridge Castle riverside\, Kent\, UK. Sunday 7th September 2025.\nSee our peoples fundraising page for details.
URL:https://slc6a1connectuk-aq.org/event/dragon-boat-race-2025/
LOCATION:Watergate (Big Bridge) Tonbridge High Street.\, The Big Bridge\, Tonbridge\, TN9 1DR
ATTACH;FMTTYPE=image/jpeg:https://slc6a1connectuk-aq.org/wp-content/uploads/2024/07/DRAGON-RACE.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20251027
DTEND;VALUE=DATE:20251030
DTSTAMP:20260430T154850
CREATED:20250811T155537Z
LAST-MODIFIED:20250811T155537Z
UID:1363-1761523200-1761782399@slc6a1connectuk-aq.org
SUMMARY:The World Orphan Drug Congress 2025 | Workshop Day
DESCRIPTION:THE MOST IMPORTANT ORPHAN DRUG EVENT WORLDWIDE\n27 October 2025 | Workshop Day\n28-29 October 2025 | Conference & Exhibition\nRAI Congress Centre\, Amsterdam\nStrategy\, Advocacy & Partnering For The Global Orphan Drug Industry\nRegister Now \n– \nThe World Orphan Drug Congress is the largest and most established orphan drug & rare disease meeting of its kind across the globe. \nFrom cell and gene therapy\, genetic testing\, and market access\, to real world evidence\, this one meeting covers the whole orphan drugs value chain where science\, government and manufacturers all come together to create groundbreaking progress. \nWe will continue to cover orphan drug progress in: \nCell & Gene Therapy \nGene Testing \nMarket Access \nEpidemiology & Forecasting \nReal World Evidence \nGlobal Patient Advocacy \nOrphan Drugs Policy \nand more \n\nDONATE
URL:https://slc6a1connectuk-aq.org/event/the-world-orphan-drug-congress-2025/
LOCATION:RAI Congress Centre\, Amsterdam\, RAI Congress Centre\, Europaplein 24\, 1078 GZ Amsterdam\, Amsterdam\, Netherlands
ATTACH;FMTTYPE=image/jpeg:https://slc6a1connectuk-aq.org/wp-content/uploads/2025/08/Orphan_Drug_Congress-2025-RAI_Amsterdam.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20251205
DTEND;VALUE=DATE:20251210
DTSTAMP:20260430T154850
CREATED:20250811T152400Z
LAST-MODIFIED:20250811T152628Z
UID:1352-1764892800-1765324799@slc6a1connectuk-aq.org
SUMMARY:AES Annual Meeting 2025
DESCRIPTION:The AES Annual Meeting brings together healthcare providers\, scientists\, advocates\, industry\, and other professionals dedicated to better outcomes for people with epilepsy. \nWe look forward to exchanging ideas\, sharing and celebrating scientific breakthroughs\, and building professional connections that sustain and strengthen our field and our impact as a global epilepsy community. Join us. \nJoin us in Atlanta this December for the best in epilepsy education\, science\, and networking! \n\n\nThe AES Annual Meeting brings together healthcare providers\, scientists\, advocates\, industry\, and other professionals dedicated to better outcomes for people with epilepsy. \nThe AES Annual Meeting is the premier event for healthcare providers\, scientists\, advocates\, industry\, and other professionals dedicated to better outcomes for people with epilepsy. \nThe meeting boasts five days of top-notch live educational content\, cutting-edge science\, new tools and technologies\, and energy and community you won’t find anywhere else. \nRegister Now\nRegister and book your hotel today—rooms are booking quickly! \nJoin us in December for the largest epilepsy-focused event in the US. \nEnjoy top-notch learning that will help you stay on the cutting edge of epilepsy science and care—no matter your career stage! In-person and on-demand options are available. \n\n\nRegister NowDONATE
URL:https://slc6a1connectuk-aq.org/event/aes-annual-meeting-2025/
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