SLC6A1connect symposium 2023
2023-11-30
Save The Date
Please save the date for the 2023 SLC6A1 Connect International Symposium. The symposium will be held on November 30th, 2023 in Orlando, Florida.
This 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.
Would you like to help? Do you have a talent? Reach out! If you have a talent, we have the need.
We have MANY sponsorship slots available. Please pass this document along!
Videos from the 2023 SLC6A1 Symposium Scientific Track now available:
https://slc6a1connect.org/2024/01/28/2023-slc6a1-connect-symposium-science-track-videos-now-available/

DONATE

Epilepsy and Rare Disease Awareness and Fundraiser
2024-02-01 - 2024-03-31
Epilepsy and Rare Disease Awareness and Fundraiser – FEB/MARCH 2024

2nd 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.

DONATE

QUIZ NIGHT – Mayoral event
2024-02-08
Quiz Night!
TOFS (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.

DONATE

Rare Disease Day 2024 #lightupforrare
2024-02-08
Everyone can participate in the Global Chain of Lights and Share Your Colours!
In 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.
You can use garlands, social media filters, candles, disco lamps, colourful decorations… Let your creativity shine!
We 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.
We have prepared information and instructions for you in the attached document. Print it out or email it to friends!
Cover picture for the Light Up For Rare instructions
https://download2.rarediseaseday.org/…/lightupforrare…
There is also a film for you to play on your TV or your laptop. Take a look and play it from your window!
https://download2.rarediseaseday.org/…/lightupforrare…
You can also download the #lightupforrare video to your computer.
By 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.
Though 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.
#slc6a1 #epilepsyawareness #arthursquestcharity #rarediseaseday2024 #drugrepurposing #raredisease #Space2BeMe

DONATE

iDR24
2024-03-06 - 2024-03-07 | RECINTE MODERNISTA DE SANT PAU, C/ de Sant Quintí, 89 Horta-Guinardó, Barcelona, 08025, Spain
#iDR24 offers an opportunity to explore & engage with content across 3 paths. One of these paths is RARE DISEASES which will cover:

Session #1: “Why care about repurposing for rare diseases?”
Session #2: “Leading a drug repurposing project”
Session #3: “The evolving rare disease landscape: past, present, and future”

Lindsay Randall will presenting on the 7th March on innovating, connecting and reshaping drug repurposing.
View the sessions and get your tickets: https://lnkd.in/dXTwTK7D
#iDR24 #RareDiseases #LightningTalks #DrugRepurposing #PatientAdvocacy

DONATE

Online Raffle – 6th March at 8pm
2024-03-06 20:00 - 20:30 (Europe/London)
WIN FANTASTIC PRIZES – with thanks to local Tonbridge businesses and community.
Arthur’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!
All proceeds will go directly towards researching treatments for rare disease SLC6A1.
Tickets can be purchased through the PayPal QR code, or the Crowdfunder event attached: https://www.crowdfunder.co.uk/…/arthursquest-prizedraw…
£5 per strip of 5 tickets. Many prizes are for local Tonbridge use.We would like to thank all the donors and our supporters.
We will run a live draw on our Instagram #arthursquestcharity on March 6th at 8pm-and winners will then be contact by email. Good luck!!!

DONATE

Dinner and Dance @NIZELS Hildenborough
2024-06-08 | NIZELS, Nizels Golf & Country Club, Nizels Lane,, Hildenborough, Kent, TN11 8NU, United Kingdom
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.

Please email contact@slc6a1connectuk-aq.org for tickets.

A 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!
DONATE

Golf Day @NIZELS Hildenborough
2024-07-05 | NIZELS, Nizels Golf & Country Club, Nizels Lane,, Hildenborough, Kent, TN11 8NU, United Kingdom
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?
Also includes; lunch, games and prizes and a raffle.
Friday 28th June – £99 – Tea, Coffee and Bacon Baguettes & 18 holes (parking available on site).

Please email contact@arthursquest.org for tickets.

DONATE

Dragon Boat Race
2024-09-01 | Watergate (Big Bridge) Tonbridge High Street., The Big Bridge, Tonbridge, TN9 1DR
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!
If you are interested in being part of the team, please get in touch here.
We must mention our proud event sponsors, without their support the event would not be possible. A huge thank you to:

Verdigris – 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.

Widgit – 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)
Our 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.

BIGBLUE – 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)
The recruitment process should be an enjoyable and efficient experience for all involved.
Genial 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.

Absolute 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)

Control 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.

15th European Epilepsy Congress
2024-09-07 - 2024-09-11 | The Roma Convention Center La Nuvola, Viale Asia, 40 /44, Roma, Metropolitan City of Rome Capital, 00144, Italy
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.

DONATE

The World Orphan Drug Congress 2024
2024-10-22 - 2024-10-25 | Fira de Barcelona – Montjuïc – Hall 2, C/ de Lleida, 4, (Entrance off Lleida Street), Barcelona, Select a State:, 08004, Spain
THE MOST IMPORTANT ORPHAN DRUG EVENT WORLDWIDE
The 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.​
We will continue to cover orphan drug progress in:
Cell & Gene Therapy
Gene Testing
Market Access
Epidemiology & Forecasting
Real World Evidence
Global Patient Advocacy
Orphan Drugs Policy
and more
From 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.​
HOW TO GET THERE
How to get there – Guest Events (firabarcelona.com)

DONATE

SLC6A1connect symposium 2024
2024-12-04 - 2024-12-05
Details TBC soon

DONATE

AES Annual Meeting 2024
2024-12-06 - 2024-12-10
Join us in Los Angeles this December for the best in epilepsy education, science, and networking!
The AES Annual Meeting brings together healthcare providers, scientists, advocates, industry, and other professionals dedicated to better outcomes for people with epilepsy.
Information about AES 2024 will be available soon. Sign up here to receive an email notification when registration opens!
The AES Annual Meeting is the premier event for healthcare providers, scientists, advocates, industry, and other professionals dedicated to better outcomes for people with epilepsy.
The 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.

DONATE

SLC6A1 Europe 2025 Inaugural Scientific Symposium and Family Conference
2025-08-29 | Vila Gale Opera, Vila Gale Opera, Travessa Conde Da Ponte, Lisbon,, Lisbon, 1300-141, Portugal
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!
There will be two presentation rooms at the event, a family room and a scientific room.

The 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.
The 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.
Families 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.
Children 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.
Join 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.

Scientific registration is for :
1 day – 8.00am to 5.00pm
Includes 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
–
Family Registration is for:
2 days
Families 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.
29th is the family conference which includes:
8.00am to 5.00pm conference
Includes 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.
There will be an accessible respite room for families to take breaks in throughout the day as needed.
–
Book Your Room:
25 rooms are available at the hotel.
Click here to view available options.
–
Rare Reception:
Drinks reception 5pm to late, venue tbc.
Register 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.
FREE
SCIENTIFIC REGISTRATIONFAMILY REGISTRATIONBOOK YOUR ROOMRARE RECEPTION

36th International Epilepsy Congress
2025-08-30 - 2025-09-03 | Lisbon, 36th International Epilepsy Congress, Lisbon, Portugal
This event will showcase the best in current knowledge and developments in the epilepsy world.
SLC6A1 Special Interest Session is bright and early, 8am to 9.30am Monday 1st September.
Special Interest Session 3
Session title: Epilepsy and neurodevelopmental comorbidities of SLC6A1-related disorders
Chair: Vincenzo Crunelli (United Kingdom)
Parenting siblings with SLC6A1 mutations and strategy of patient organisations – Lindsay Randall (United Kingdom)
From genotype to protein structure to phenotype in SLC6A1-related disorders – Dennis Lal (USA)
Non-seizure characteristics of SLC6A1-related neurodevelopmental disorders – Katrine Marie Johannesen (Denmark)
SLC6A1 function in health and disease using GABASnFR – Chris Dulla (USA)
Targeting astrocytic GAT1 dysfunction rescues absence seizures and their comorbidities – Tatiana Morais (Portugal)
Register for the event here:
https://www.ilae.org/congresses/36th-international-epilepsy-congress/section/sectionid/3
SCIENTIFIC REGISTRATION

Dragon Boat Race 2025
2025-09-07 | Watergate (Big Bridge) Tonbridge High Street., The Big Bridge, Tonbridge, TN9 1DR
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.
Support us with sponsorship, and join us on the day at:
Tonbridge Castle riverside, Kent, UK. Sunday 7th September 2025.
See our peoples fundraising page for details.

The World Orphan Drug Congress 2025 | Workshop Day
2025-10-27 - 2025-10-29 | RAI Congress Centre, Amsterdam, RAI Congress Centre, Europaplein 24, 1078 GZ Amsterdam, Amsterdam, Netherlands
THE MOST IMPORTANT ORPHAN DRUG EVENT WORLDWIDE
27 October 2025 | Workshop Day
28-29 October 2025 | Conference & Exhibition
RAI Congress Centre, Amsterdam
Strategy, Advocacy & Partnering For The Global Orphan Drug Industry
Register Now
–
The World Orphan Drug Congress is the largest and most established orphan drug & rare disease meeting of its kind across the globe.
From 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.
We will continue to cover orphan drug progress in:
Cell & Gene Therapy
Gene Testing
Market Access
Epidemiology & Forecasting
Real World Evidence
Global Patient Advocacy
Orphan Drugs Policy
and more

DONATE

AES Annual Meeting 2025
2025-12-05 - 2025-12-09
The AES Annual Meeting brings together healthcare providers, scientists, advocates, industry, and other professionals dedicated to better outcomes for people with epilepsy.
We 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.
Join us in Atlanta this December for the best in epilepsy education, science, and networking!

The AES Annual Meeting brings together healthcare providers, scientists, advocates, industry, and other professionals dedicated to better outcomes for people with epilepsy.
The AES Annual Meeting is the premier event for healthcare providers, scientists, advocates, industry, and other professionals dedicated to better outcomes for people with epilepsy.
The 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.
Register Now
Register and book your hotel today—rooms are booking quickly!
Join us in December for the largest epilepsy-focused event in the US.
Enjoy 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.

Register NowDONATE
