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BEGIN:VEVENT
DTSTART;VALUE=DATE:20251205
DTEND;VALUE=DATE:20251210
DTSTAMP:20260428T151103
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/
ATTACH;FMTTYPE=image/jpeg:https://slc6a1connectuk-aq.org/wp-content/uploads/2025/08/AES_25-Arhurs_Quest-v2.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20251027
DTEND;VALUE=DATE:20251030
DTSTAMP:20260428T151103
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:20250907
DTEND;VALUE=DATE:20250908
DTSTAMP:20260428T151103
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:20250830
DTEND;VALUE=DATE:20250904
DTSTAMP:20260428T151103
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
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20250829
DTEND;VALUE=DATE:20250830
DTSTAMP:20260428T151103
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
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20241206
DTEND;VALUE=DATE:20241211
DTSTAMP:20260428T151103
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:20241204
DTEND;VALUE=DATE:20241206
DTSTAMP:20260428T151103
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:20241022
DTEND;VALUE=DATE:20241026
DTSTAMP:20260428T151103
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:20240907
DTEND;VALUE=DATE:20240912
DTSTAMP:20260428T151103
CREATED:20240226T141214Z
LAST-MODIFIED:20240226T141311Z
UID:846-1725667200-1726099199@slc6a1connectuk-aq.org
SUMMARY:15th European Epilepsy Congress
DESCRIPTION:Arthur’s Quest\, European SLC6A1 counterparts\, researchers and clinicians will come together for an informative 90 minute educational session covering 4 or 5 topics spanning the work being done to improve outcomes for people with SLC6A1. Lindsay Randall will be chairing this event. \n\n\nDONATE
URL:https://slc6a1connectuk-aq.org/event/15th-european-epilepsy-congress/
LOCATION:The Roma Convention Center La Nuvola\, Viale Asia\, 40 /44\, Roma\, Metropolitan City of Rome Capital\, 00144\, Italy
ATTACH;FMTTYPE=image/jpeg:https://slc6a1connectuk-aq.org/wp-content/uploads/2024/02/Epilepsey-congress-2.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20240901
DTEND;VALUE=DATE:20240902
DTSTAMP:20260428T151103
CREATED:20240729T142544Z
LAST-MODIFIED:20250812T140350Z
UID:1075-1725148800-1725235199@slc6a1connectuk-aq.org
SUMMARY:Dragon Boat Race
DESCRIPTION:Dragon Boat Race – poster attached – September 1st\, 2024. Arthur’s Quest has teamed up with fellow disability charity Space 2 be me (www.space2beme.org.uk) to win the Tonbridge annual Dragon Boat Race on the River Medway. This will be an exciting fundraising competitive event\, as teams battle it out through several heats to win the competition. We will have a total of 17 people in any one race\, including 16 paddlers and a pace keeping drummer. We will have a stand along the castle wall\, which will also be the teams base. This is a free event\, so please do come along and support us on the day! \nIf you are interested in being part of the team\, please get in touch here. \nWe must mention our proud event sponsors\, without their support the event would not be possible. A huge thank you to: \n \nVerdigris – offering casual riverside dining at its best! Relax by the river overlooking Tonbridge Castle and watch the world go by. Food and our kitchen is the very heart of Verdigris. We really truly believe this. With our new adventure in food we are looking at local and seasonal dishes designed to share with friends\, family and loved ones. Our menu will adapt with the seasons and availability of produce. This is the way we wish to be…. always changing\, always moving\, always exciting. Life can be a beautiful journey and we believe wine should be too\, and so we have a masterfully created wine list available\, as well as expertly prepared cocktails.  \n \nWidgit – InPrint 3 | Design Symbol Materials to Print : We are Widgit\, a pioneering software company with a passion for symbols-based communication. We empower individuals to express themselves independently through symbols\, aiding comprehension and understanding across any environment. We primarily cater to individuals with communication difficulties of all ages\, including autistic people\, learning disabilities\, and speech impairments. Our solutions are designed to support educators\, therapists\, and caregivers by enhancing inclusive learning environments while promoting meaningful interactions. (logo attached) \nOur Widgit Online and InPrint software give users access to our entire symbol language\, designed to meet the unique needs of symbol users across a multitude of settings. From flashcards to vocabulary lists to fully symbolised books\, our solutions make it easy to personalise a wide range of materials – helping to facilitate communication in the everyday world. \n \nBIGBLUE – We deliver executive search and recruitment expertise to the design\, property\, and construction industry. Our extensive experience and unrivalled market knowledge have helped build the teams behind leading companies in the design and construction industry today. (logo attached) \nThe recruitment process should be an enjoyable and efficient experience for all involved. \nGenial consultants attract like-minded candidates. Our key driver is transforming the way people work by connecting two dynamic forces together; that is when things start to get exciting and workplace transformation can begin. \n \nAbsolute Creative Print – Digital Printing Solutions in Kent : Absolute Creative Print have been designing and printing across Kent and the South East since 2010\, with a great ethos where no job is too big or small. With continued investments in the latest technology\, we have transformed from a small copy shop to an on-demand design\, print and display company. Working on a variety of projects\, we are here to assist and work alongside you to create the best possible solution for your business. (pending logo) \n \nControl Energy Costs Ltd – Control Energy Costs has been in the energy business since 1981\, this means we truly understand the energy market. Our business is to provide you with a complete end-to-end energy service. We support clients with the implementation of carbon solutions to drive Net Zero\, as well as mitigate the uncertainty of fluctuating energy costs\, identify savings opportunities\, manage consumption effectively and undertake utility connections and siteworks projects.  \n 
URL:https://slc6a1connectuk-aq.org/event/dragon-boat-race-24/
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:20240705
DTEND;VALUE=DATE:20240706
DTSTAMP:20260428T151103
CREATED:20240226T131302Z
LAST-MODIFIED:20240227T160610Z
UID:825-1720137600-1720223999@slc6a1connectuk-aq.org
SUMMARY:Golf Day @NIZELS Hildenborough
DESCRIPTION:Enjoy a light breakfast at Nizels indoor/outdoor restaurant and bar\, before heading out to play 18 holes at this stunning parkland championship course in the Kent countryside. Measuring 6\,361 yards from the back tees\, Nizels consists of five Par 5s and five Par 3s\, giving golfers of all abilities the chance to make a good score. The course has played host to the Henry Cooper Junior Masters since 1998. Can you keep your ball out of the three course lakes? \nAlso includes; lunch\, games and prizes and a raffle. \nFriday 28th June – £99 – Tea\, Coffee and Bacon Baguettes & 18 holes (parking available on site). \n\nPlease email contact@arthursquest.org for tickets. \n\nDONATE
URL:https://slc6a1connectuk-aq.org/event/golf-day-nizels-hildenborough/
LOCATION:NIZELS\, Nizels Golf & Country Club\, Nizels Lane\,\, Hildenborough\, Kent\, TN11 8NU\, United Kingdom
ATTACH;FMTTYPE=image/jpeg:https://slc6a1connectuk-aq.org/wp-content/uploads/2024/02/GOLF-DAY.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20240608
DTEND;VALUE=DATE:20240609
DTSTAMP:20260428T151103
CREATED:20240226T125228Z
LAST-MODIFIED:20240719T135009Z
UID:818-1717804800-1717891199@slc6a1connectuk-aq.org
SUMMARY:Dinner and Dance @NIZELS Hildenborough
DESCRIPTION:Enjoy welcome drink on arrival\, a 3 course meal with Tea and Coffee\, followed by a DJ to entice you on to the dancefloor to shake the week off at Nizels Golf & Country Club on Saturday June 8th\, 2024 – £60pp (parking available on site). There will be a charity raffle sold and drawn on the evening\, with some fabulous prizes from local businesses in the Tonbridge and Malling community. We will be using the event to say a huge thankyou to Cllr James Lark for his support in choosing Arthur’s Quest as his charity of the year 23/24\, which ends on May 14th 2024. \n\nPlease email contact@slc6a1connectuk-aq.org for tickets. \n\nA huge thank you to these businesses for supporting our charity dinner dance on Saturday 8th June at Nizels. Without the generosity of local businesses\, friends\, family\, and larger organisations further afield\, running fundraising events would feel impossible. THANK YOU! \nDONATE
URL:https://slc6a1connectuk-aq.org/event/dinner-dance-at-nitzels-hildenborough/
LOCATION:NIZELS\, Nizels Golf & Country Club\, Nizels Lane\,\, Hildenborough\, Kent\, TN11 8NU\, United Kingdom
ATTACH;FMTTYPE=image/jpeg:https://slc6a1connectuk-aq.org/wp-content/uploads/2024/02/DINNER-DANCE.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20240306T200000
DTEND;TZID=Europe/London:20240306T203000
DTSTAMP:20260428T151103
CREATED:20240223T164809Z
LAST-MODIFIED:20240226T132434Z
UID:807-1709755200-1709757000@slc6a1connectuk-aq.org
SUMMARY:Online Raffle – 6th March at 8pm
DESCRIPTION:WIN FANTASTIC PRIZES – with thanks to local Tonbridge businesses and community.\nArthur’s Quest are pleased to announce that\, with some very generous donations from Tonbridge businesses\, we are excited to be holding our very first Rare PrizeDraw! \nAll proceeds will go directly towards researching treatments for rare disease SLC6A1. \nTickets can be purchased through the PayPal QR code\, or the Crowdfunder event attached: https://www.crowdfunder.co.uk/…/arthursquest-prizedraw… \n£5 per strip of 5 tickets. Many prizes are for local Tonbridge use.We would like to thank all the donors and our supporters. \nWe will run a live draw on our Instagram #arthursquestcharity on March 6th at 8pm-and winners will then be contact by email. Good luck!!! \n\n\nDONATE
URL:https://slc6a1connectuk-aq.org/event/events_online_raffle/
ATTACH;FMTTYPE=image/jpeg:https://slc6a1connectuk-aq.org/wp-content/uploads/2024/02/online-raffle.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20240306
DTEND;VALUE=DATE:20240308
DTSTAMP:20260428T151103
CREATED:20240226T134214Z
LAST-MODIFIED:20240716T143124Z
UID:838-1709683200-1709855999@slc6a1connectuk-aq.org
SUMMARY:iDR24
DESCRIPTION:#iDR24 offers an opportunity to explore & engage with content across 3 paths. One of these paths is RARE DISEASES which will cover: \n\nSession #1: “Why care about repurposing for rare diseases?”\nSession #2: “Leading a drug repurposing project”\nSession #3: “The evolving rare disease landscape: past\, present\, and future”\n\nLindsay Randall will presenting on the 7th March on innovating\, connecting and reshaping drug repurposing. \nView the sessions and get your tickets: https://lnkd.in/dXTwTK7D \n#iDR24 #RareDiseases #LightningTalks #DrugRepurposing #PatientAdvocacy \n\n\nDONATE
URL:https://slc6a1connectuk-aq.org/event/idr24/
LOCATION:RECINTE MODERNISTA DE SANT PAU\, C/ de Sant Quintí\, 89 Horta-Guinardó\, Barcelona\, 08025\, Spain
ATTACH;FMTTYPE=image/jpeg:https://slc6a1connectuk-aq.org/wp-content/uploads/2024/02/iDr24.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20240208
DTEND;VALUE=DATE:20240209
DTSTAMP:20260428T151103
CREATED:20240223T165850Z
LAST-MODIFIED:20240223T170037Z
UID:812-1707350400-1707436799@slc6a1connectuk-aq.org
SUMMARY:Rare Disease Day 2024 #lightupforrare
DESCRIPTION:Everyone can participate in the Global Chain of Lights and Share Your Colours! \nIn an effort of global solidarity\, you are invited to light or decorate your home with the Rare Disease Day colours at 7 PM your local time on 29 February 2024. \nYou can use garlands\, social media filters\, candles\, disco lamps\, colourful decorations… Let your creativity shine! \nWe suggest you take a picture of yourself with the illuminations or decorations you chose and publish it on your social media using our “Global Chain of Light” filters and #rarediseaseday. \nWe have prepared information and instructions for you in the attached document. Print it out or email it to friends! \nCover picture for the Light Up For Rare instructions \nhttps://download2.rarediseaseday.org/…/lightupforrare… \nThere is also a film for you to play on your TV or your laptop. Take a look and play it from your window! \nhttps://download2.rarediseaseday.org/…/lightupforrare… \nYou can also download the #lightupforrare video to your computer. \nBy Sharing Your Colours and shining a beacon from your home\, office or your town\, you are participating in awareness-raising and showing your solidarity. Collectively\, we aim to change and improve the lives of 300 million people worldwide. \nThough Rare Disease Day is community-led\, everyone\, including individuals\, families\, caregivers\, healthcare professionals\, researchers\, clinicians\, policymakers\, industry representatives and the general public can participate in raising awareness and taking action today for this vulnerable population who require immediate and urgent attention. \n#slc6a1 #epilepsyawareness #arthursquestcharity #rarediseaseday2024 #drugrepurposing #raredisease #Space2BeMe \n\n\nDONATE
URL:https://slc6a1connectuk-aq.org/event/events_rare_disease_day_2024/
ATTACH;FMTTYPE=image/jpeg:https://slc6a1connectuk-aq.org/wp-content/uploads/2024/02/RARE_DISEASE_DAY-2.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20240208
DTEND;VALUE=DATE:20240209
DTSTAMP:20260428T151103
CREATED:20240223T141520Z
LAST-MODIFIED:20240223T163713Z
UID:794-1707350400-1707436799@slc6a1connectuk-aq.org
SUMMARY:QUIZ NIGHT – Mayoral event
DESCRIPTION:Quiz Night!\nTOFS (aka @TonbridgeOldFireStation) hosted a charity quiz night along with Cllr James Lark\, Mayor of Tonbridge and Malling\, in honour of Arthur’s Quest. The night venue was bursting at the seams with dignitary’s and their supporters. Thanks to the amazing audience and the gratuitous hosting\, we raised over £800. \n\n\nDONATE
URL:https://slc6a1connectuk-aq.org/event/tonbridgeoldfirestation/
ATTACH;FMTTYPE=image/jpeg:https://slc6a1connectuk-aq.org/wp-content/uploads/2020/10/Quiz_night-Arthurs_Quest2.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20240201
DTEND;VALUE=DATE:20240401
DTSTAMP:20260428T151103
CREATED:20240223T143657Z
LAST-MODIFIED:20240304T094326Z
UID:798-1706745600-1711929599@slc6a1connectuk-aq.org
SUMMARY:Epilepsy and Rare Disease Awareness and Fundraiser
DESCRIPTION:Epilepsy and Rare Disease Awareness and Fundraiser – FEB/MARCH 2024\n \n2nd Tonbridge Scouts\, Cubs and Beavers will be conducting a carousel teaching session covering epilepsy awareness\, epilepsy first aid\, and some information about rare disease and inclusive behaviour. They will be tasked with disseminating their new knowledge to friends and family\, in exchange for £1 coins to fill their Smartie tubes. \n\n\nDONATE
URL:https://slc6a1connectuk-aq.org/event/epilepsy_and_rare_disease_awareness_and_fundraiser/
ATTACH;FMTTYPE=image/jpeg:https://slc6a1connectuk-aq.org/wp-content/uploads/2024/02/fundraiser2.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20231130
DTEND;VALUE=DATE:20231201
DTSTAMP:20260428T151103
CREATED:20230918T153142Z
LAST-MODIFIED:20240226T132547Z
UID:698-1701302400-1701388799@slc6a1connectuk-aq.org
SUMMARY:SLC6A1connect symposium 2023
DESCRIPTION:Save The Date\nPlease save the date for the 2023 SLC6A1 Connect International Symposium. The symposium will be held on November 30th\, 2023 in Orlando\, Florida. \nThis year\, we plan to have two different tracks. One is aimed purely at scientists and doctors while the other is designed solely for parents. Scientists\, doctors and resources will be presenting curated material that will help educate us as a community and allow ample time for questions. \nWould you like to help? Do you have a talent? Reach out! If you have a talent\, we have the need. \nWe have MANY sponsorship slots available. Please pass this document along! \nVideos from the 2023 SLC6A1 Symposium Scientific Track now available:\nhttps://slc6a1connect.org/2024/01/28/2023-slc6a1-connect-symposium-science-track-videos-now-available/\n\n\nDONATE
URL:https://slc6a1connectuk-aq.org/event/slc6a1connect-symposium-2023/
ATTACH;FMTTYPE=image/jpeg:https://slc6a1connectuk-aq.org/wp-content/uploads/2023/09/SLC6A1connect_symposium.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20231025
DTEND;VALUE=DATE:20231027
DTSTAMP:20260428T151103
CREATED:20230918T160300Z
LAST-MODIFIED:20240207T114050Z
UID:706-1698192000-1698364799@slc6a1connectuk-aq.org
SUMMARY:RexPo - RePo4EU
DESCRIPTION:Save The Date\n\n\nThe REPO4EU Horizon Europe project currently building a European/Global Platform and Infrastructure for Drug Repurposing\nwill host its 2nd International Conference on Systems Medicine\, Artificial Intelligence and Drug Repurposing and you cannot miss it! \nBuilding on the success of our first conference last year in the city of Maastricht\, we are delighted to present the next step in this journey…\nRExPO23 is the second installment in the RExPO annual conference series and will take place in Stockholm\, Sweden\, from October 25-26 \nTHIS IS REXPO23 \n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\nDONATE
URL:https://slc6a1connectuk-aq.org/event/rexpo-repo4eu/
LOCATION:Elite Palace Hotel\, Sankt Eriksgatan 115\, 113 43\, Stockholm\, Sweden
ATTACH;FMTTYPE=image/jpeg:https://slc6a1connectuk-aq.org/wp-content/uploads/2023/09/Rexpo-23.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20231009
DTEND;VALUE=DATE:20231011
DTSTAMP:20260428T151103
CREATED:20230925T093029Z
LAST-MODIFIED:20230925T093029Z
UID:718-1696809600-1696982399@slc6a1connectuk-aq.org
SUMMARY:4th Annual Markets and Markets Orphan Drugs and Rare Diseases Conference
DESCRIPTION:SAVE THE DATE\n\n\nWith the enforcement of the 1983 Orphan Drug Act (ODA)\, manufacturers are obliged to scale production to treat rare/orphan diseases\, leading to a drastic advancement in the landscape of orphan drugs. Novel therapies aimed at treating these uncommon diseases are paramount to fulfilling the unmet needs of patients. \n\nThe present-day challenges\, including constrained resources\, disease severity\, limited patient access\, and a lack of available knowledge in rare diseases\, necessitate the discovery of innovative solutions to hasten orphan drug development. \nThe 4th Annual MarketsandMarkets Orphan Drugs and Rare Diseases Conference\, to be held on October 9–10 at Ibis London Earls Court Hotel & ILEC Conference Centre\, aims to provide a valuable and broad platform to discuss recent advances in the development of life-saving therapies\, critical issues\, and strategies to enhance orphan drug development in near future. The conference will bring together scientists\, researchers\, entrepreneurs\, academicians\, medical officials\, and technologists across the globe to discuss the newest findings in the areas of rare diseases and orphan drugs\, helping to shape present and upcoming challenges in drug analysis. It gives participants the chance to interact with industry peers and participate in this scientific conference while staying informed about the most recent developments in the study of rare diseases. \n\nevents.marketsandmarkets.com
URL:https://slc6a1connectuk-aq.org/event/4th-annual-markets-and-markets-orphan-drugs-and-rare-diseases-conference/
LOCATION:IBIS London Earls Court Hotel & ILEC Conference Centre\, 47 Lillie Rd\, London\, SW6 1UD\, United Kingdom
ATTACH;FMTTYPE=image/jpeg:https://slc6a1connectuk-aq.org/wp-content/uploads/2023/09/marketandmarkets.jpg
ORGANIZER;CN="Markets and Markets":MAILTO:events@marketsandmarkets.com
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20230902
DTEND;VALUE=DATE:20230907
DTSTAMP:20260428T151103
CREATED:20230918T151358Z
LAST-MODIFIED:20240207T114115Z
UID:692-1693612800-1694044799@slc6a1connectuk-aq.org
SUMMARY:International League Against Epilepsy congress 2023
DESCRIPTION:SLC6A1 patient advocacy groups from around the world united in Dublin for the International League Against Epilepsy congress 2023.  \nWhat a truly wonderful and exciting opportunity to meet some of our SLC6A1 family to speak with scientists\, doctors\, and researchers already doing wonderful work to help our cause\, but also to bring them together with a wider network of specialists\, to inform\, to educate and to raise awareness. Meeting with Katty Kang from Vanderbilt who discovered the impact of phenylbutyrate on the slc6a1 pathway was particularly exciting. What an amazing human being. Better treatments are coming. Gene therapy is coming. GAT1 is firmly on the map! @arthursquest #slc6a1connectuk www.arthursquest.org #slc6a1 #slc6a1connect #slc6a1connetitalia #slc6a1connectbelgie #meesterbrein #slc6a1connectspain  \n\n\nDONATE
URL:https://slc6a1connectuk-aq.org/event/international-league-against-epilepsy-congress-2023/
LOCATION:The Convention Centre Dublin\, Spencer Dock\, North Wall Quay\, Dublin\, Ireland
ATTACH;FMTTYPE=image/jpeg:https://slc6a1connectuk-aq.org/wp-content/uploads/2023/09/35th_International_Epilepsy_Congress.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20230805
DTEND;VALUE=DATE:20230806
DTSTAMP:20260428T151103
CREATED:20230918T144355Z
LAST-MODIFIED:20230919T092943Z
UID:688-1691193600-1691279999@slc6a1connectuk-aq.org
SUMMARY:Model Railway Tonbridge
DESCRIPTION:Model Railway Tonbridge – 5th August 2023 – The miniature railway in the Town of Tonbridge\, which is a favourite attraction of Arthur and his sister as they ride around pointing at all the squirrels as they go\, is donating some profits from this days sales. \nA huge thank you for your support! \n \n\n\nDONATE
URL:https://slc6a1connectuk-aq.org/event/model-railway-tonbridge/
LOCATION:Tonbridge Miniture Railway\, The Old Power Station\, 26 The Slade\, Tonbridge\, TN9 1HR\, United Kingdom
ATTACH;FMTTYPE=image/jpeg:https://slc6a1connectuk-aq.org/wp-content/uploads/2023/09/miniture_train.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20230723
DTEND;VALUE=DATE:20230724
DTSTAMP:20260428T151103
CREATED:20230918T143516Z
LAST-MODIFIED:20230918T143844Z
UID:686-1690070400-1690156799@slc6a1connectuk-aq.org
SUMMARY:Classic Car Ride Out
DESCRIPTION:Classic Car Ride Out – A mayoral event raising money and the profile of AQ. This is a private event taking place on Sunday 21st July 2023. \nA big thank you to all the classic car lovers for taking part and supporting us! \n\n\nDONATE
URL:https://slc6a1connectuk-aq.org/event/classic-car-ride-out/
ATTACH;FMTTYPE=image/jpeg:https://slc6a1connectuk-aq.org/wp-content/uploads/2023/09/classic_car_ride_out.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20220924
DTEND;VALUE=DATE:20220925
DTSTAMP:20260428T151103
CREATED:20230918T142347Z
LAST-MODIFIED:20230918T142347Z
UID:667-1663977600-1664063999@slc6a1connectuk-aq.org
SUMMARY:BIGBLUE - 3 Peak Challenge\, 24th September 2022.
DESCRIPTION:A huge thankyou to the team at BIGBLUE recruitment consultancy for supporting our charity by climbing the 3 Peak Challenge in 24hours. It was a gruelling event for them\, but they all did brilliantly\, despite the obvious physical punishment. The team raised over £4\,000 towards our research and development. \n \n \n\n\nDONATE
URL:https://slc6a1connectuk-aq.org/event/bigblue-3-peak-challenge-24th-september-2022/
LOCATION:Three Peaks Challenge Yorkshire\, PH33 6ST\, United Kingdom
ATTACH;FMTTYPE=image/jpeg:https://slc6a1connectuk-aq.org/wp-content/uploads/2023/09/three_peaks_challenge.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20220320T090000
DTEND;TZID=UTC:20220320T173000
DTSTAMP:20260428T151103
CREATED:20211222T150312Z
LAST-MODIFIED:20211222T165420Z
UID:535-1647766800-1647797400@slc6a1connectuk-aq.org
SUMMARY:Hampton Court Half Marathon
DESCRIPTION:‘Ten amazing humans have signed up to complete the Hampton Court half marathon on March 20th 2022 in support of Arthur’s Quest\, most of whom are new to running. This means a merciless training regime throughout the depths of UK winter\, blisters\, chapped lips\, frosty fingers and windburned cheeks. Why are they putting themselves through all that? \nArthur is 5 years old and suffers from a rare neurological condition known only by the gene code SLC6A1. This condition causes a rare form of epilepsy which is extremely hard to treat\, autism\, muscle weakness\, learning disability\, speech and language delay/difficulty\, behavioural changes and regression and the children require speech therapy\, Physio\, Occupational Therapy\, specialist school provision and endless appointments. The genetic change was found in 2015 and Arthur was diagnosed in 2018. Arthur’s parents tested negative for the gene\, and despite that\, his baby sister was diagnosed age 1 in 2020. It has taken a year of falling over from drop seizures\, facial injuries\, a lost tooth and several medication changes to finally get some control of her seizures with a cocktail of anti epileptic drugs. There are currently hundreds of children diagnosed across the globe with this condition\, and more get diagnosed every day. Scientists and doctors have taken interest in the speed at which people are being diagnosed\, and the spectrum of disabilities experienced by the sufferers. The studies done on the condition to date estimate the condition to affect 1:3500 births\, and is the 10th cause of autism and 6th cause of epilepsy. \nParents have rallied together and in the last 4 years\, they have work tirelessly to raise money to fund research for better treatments and a cure\, and it is working. Data collection and research to treat and cure this disease is taking place at UT Southwestern\, University of Pennsylvania\, Uplifting Athletes\, Gladstone institutes\, University of California at San Francisco\, Collaborations pharmaceuticles\, Cyclia\, University of Colorado Boulder\, and Vanderbilt University. We currently have 12 children on a drug trial in the US and Europe using a repurposing study for a drug already taken by children for a completely different condition\, so far the results are good. These children and young people and their families are suffering on a daily basis. Just when they think things are improving\, the children regress and the work starts all over again. A cure cannot come soon enough! This is not shooting in the dark\, the science is already happening\, the contacts have already been made\, but what they do need is money to keep it going\, to reach the end goal\, before irreversible neurological damage sets in. \nSo come out and support the team\, donate to this amazing cause\, warm the runners up with your kindness and your generosity. \nIt will be appreciated more than you could know’. \nWant to know more? Visit www.arthursquest.org and www.slc6a1connect.org \n\n\nDONATE
URL:https://slc6a1connectuk-aq.org/event/hampton-court-half-marathon/
LOCATION:Hampton Court Palace\, Hampton Ct Way\, East Molesey\, KT8 9AU
ATTACH;FMTTYPE=image/jpeg:https://slc6a1connectuk-aq.org/wp-content/uploads/2021/12/Hamton-half-marathon-2.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20201101
DTEND;VALUE=DATE:20211201
DTSTAMP:20260428T151103
CREATED:20201019T153308Z
LAST-MODIFIED:20201102T121724Z
UID:443-1604188800-1638316799@slc6a1connectuk-aq.org
SUMMARY:£1 Cure Challenge
DESCRIPTION:A national campaign to cure children with rare neurological condition SLC6A1. \nDONATE JUST £1 TODAY NOVEMBER IS NATIONAL EPILEPSY MONTH. \nSLC6A1 IS A LEADING CAUSE OF EPILEPSY BY GENETIC CHANGE. LET’S MARK THE EVENT AND FUND THE RESEARCH TO CURE THIS CHILDHOOD DISEASE! HELP MAKE THIS EVENT A NATIONAL SUCCESS BY DONATING £1 TODAY AND SHARING ON SOCIAL MEDIA AND WITH YOUR CONTACTS. \n\n\nDONATE
URL:https://slc6a1connectuk-aq.org/event/one-pound-cure-challenge/
ATTACH;FMTTYPE=image/jpeg:https://slc6a1connectuk-aq.org/wp-content/uploads/2020/11/1-pound-cure-challenge.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20200731
DTEND;VALUE=DATE:20200801
DTSTAMP:20260428T151103
CREATED:20200622T111438Z
LAST-MODIFIED:20201021T163112Z
UID:233-1596153600-1596239999@slc6a1connectuk-aq.org
SUMMARY:Tonbridge Half Marathon Day
DESCRIPTION:Today was Tonbridge half marathon day and it started off tipping it down\, it was not looking good\, but just in time the sun came out and the rain stopped. \nThe team were in good spirits despite some nerves for the novices. The hills were tough\, but they all did so great\, finishing between 1hr 57 and 2hr 29. \nArthur watched with a heavily pregnant Mummy (whose waters broke the next day!) and friends on the sideline\, but was able to fit in a quick game of golf once the runners were out of sight. A truly great result. Celebrations were had post run at the Poacher & Partridge. \nThe team raised to date £2\,400 for arthursquest.org all of which went to research for the gene therapy needed to cure Arthur’s rare disorder at UT Southwestern. \nA huge thank you to the lovelies that ran for us today.
URL:https://slc6a1connectuk-aq.org/event/tonbridge-half-marathon-day-2/
LOCATION:Judd School\, Brook Street\, Tonbridge\, Kent\, TN9 2PW\, United Kingdom
ATTACH;FMTTYPE=image/jpeg:https://slc6a1connectuk-aq.org/wp-content/uploads/2020/06/Arthurs_Quest-marathon_finish-e1592170429363.jpeg
ORGANIZER;CN="Tonbridge Half Marathon Organising Committee":MAILTO:enquiries@tonbridgehalfmarathon.co.uk
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20200603T190000
DTEND;TZID=UTC:20200603T223000
DTSTAMP:20260428T151103
CREATED:20200616T140245Z
LAST-MODIFIED:20201021T162853Z
UID:101-1591210800-1591223400@slc6a1connectuk-aq.org
SUMMARY:Fosse Bank Association Quiz Night - ON HOLD
DESCRIPTION:Apologies\, but this event is currently on hold due to Covid-19. As soon as we have more information\, we’ll ket you know.
URL:https://slc6a1connectuk-aq.org/event/fosse-bank-association-quiz-night-on-hold/
LOCATION:Fossse Bank School\, Noble Tree Rd\, Hildenborough\, Tonbridge\, TN11 8ND\, United Kingdom
ATTACH;FMTTYPE=image/jpeg:https://slc6a1connectuk-aq.org/wp-content/uploads/2020/10/Quiz_night-Arthurs_Quest2.jpg
ORGANIZER;CN="Fosse Bank Association":MAILTO:fosseassociation@fossebankschool.co.uk
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20200601T000000
DTEND;TZID=UTC:20200930T000000
DTSTAMP:20260428T151103
CREATED:20200727T161613Z
LAST-MODIFIED:20201021T162751Z
UID:383-1590969600-1601424000@slc6a1connectuk-aq.org
SUMMARY:Pounds for Pedals
DESCRIPTION:Support Arthur’s 4 mile journey on his new balance bike to raise money for research to cure his disease.\nThanks for visiting my fundraising page! \n\n\nPlease help me support SLC6A1 Connect by making a donation through my page. The process is fast\, easy and secure. Arthur suffers from this disease and struggles with epilepsy\, movement disorder and developmental delay. It will be a wonderful day when Arthur completes this challenge. Thanks so much for your support… and please don’t forget to send this page to any friends you think might be interested in donating! \n\n\n\n\nDONATE
URL:https://slc6a1connectuk-aq.org/event/pounds-for-pedals-or-arthurs-balance-steps/
ATTACH;FMTTYPE=image/jpeg:https://slc6a1connectuk-aq.org/wp-content/uploads/2020/07/Arthurs-Quest_Bike_Ride_Fund-Raiser2.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20200506T190000
DTEND;TZID=UTC:20200506T223000
DTSTAMP:20260428T151103
CREATED:20200615T125021Z
LAST-MODIFIED:20200630T154226Z
UID:98-1588791600-1588804200@slc6a1connectuk-aq.org
SUMMARY:Fosse Bank Association Quiz Night
DESCRIPTION:Wow – thank you so much to the Fosse Association who have raised £210 for Arthur’s Quest at their fantastic quiz night – a great night was had by all and the kind donations of parents and friends will be used to further research into gene replacement therapy for our children.
URL:https://slc6a1connectuk-aq.org/event/fosse-bank-association-quiz-night/
LOCATION:Fossse Bank School\, Noble Tree Rd\, Hildenborough\, Tonbridge\, TN11 8ND\, United Kingdom
ATTACH;FMTTYPE=image/jpeg:https://slc6a1connectuk-aq.org/wp-content/uploads/2020/06/Quiz_night-Arthurs_Quest.jpg
ORGANIZER;CN="Fosse Bank Association":MAILTO:fosseassociation@fossebankschool.co.uk
END:VEVENT
END:VCALENDAR