International conference and ultra-rare research on Ring20 epilepsy set for Coventry
Ring20 Research & Support, a registered UK charity, has announced that its next research and families conference will take place at The Slate, Milburn Hill Road, Coventry, from Friday 30th October to Sunday 1st November.
Based in the UK, the charity promotes international research, education and continuous support to end undiagnosed and misdiagnosed Ring20, an ultra-rare form of epilepsy with only approximately 200 people reported worldwide.
Feeling alone, isolated and unable to find support or research on Ring20 epilepsy, the charity set up by Allison Watson and Donald Gordon after Allison’s son was diagnosed with the condition at aged 8.
What started as a small Facebook support group has led to the charity now supporting families across the world, undertaking and publishing studies on different aspects of Ring20 epilepsy as well as bringing healthcare professionals, geneticists, researchers and scientists and families together to connect, learn and collaborate to develop more research and awareness of the condition.
Allison said
“As a mother of a 29-year-old living with Ring20 epilepsy, I have over 20 years lived experience of uncontrolled epilepsy and its impact on daily life. When medicine doesn’t have the answers yet, it’s in the power of connection with other families going through the same journey that enables us to cope and find practical solutions to everyday challenges. We cannot wait for researchers to find solutions to diagnostic decline and ineffective treatments; we need to drive the research agenda, and in so doing keep our family’s needs uppermost – because to be informed is to be empowered to make decisions and take back control. The 3rd Ring20 Families Conference and Scientific Meeting will bring together key opinion leaders in the field to share knowledge and experience, creating new networks and collaborations to explore opportunities to improve understanding, treatment and care for all people living with Ring20 epilepsy.”
During the conference, members of the clinical genetics team at Birmingham Women’s and Children’s NHS Foundation Trust will have the rare opportunity to take blood and saliva samples from many individuals living with Ring20 epilepsy and their parents which has never been done before.
“Currently, only 200 individuals are reported in medical literature to be living with Ring20 epilepsy across the world, yet we are connected with over 200 families and are aware of others. Getting people together living with Ring20 epilepsy is incredibly difficult, due to demographics. This conference offers researchers a unique opportunity to collect real-time samples to see if they can discover what causes the ring formation and why it causes the debilitating symptoms experience.”
The conference programme will host a variety of sessions, including a dedicated scientific meeting (for professionals), research updates and Q&A, clinical research, wellbeing sessions for Ring20 individuals and their families, and a family fun day, to name just a few. Ring20 Research & Support will also discuss their own funded research on the impact of living with Ring20 epilepsy on the individual and their families, and SUDEP risk.
Looking to the future, Ring20 Research & Support are aiming to build on genomic research with partners in Birmingham, CHOP and Leuven to make diagnosis easier and find more effective treatments.
“It is estimated that less than 1% of people with a ring chromosome are diagnosed. Achieving a true diagnosis can lead to more targeted treatments and precision medicine in the future, but for now it allows families to connect with each other, to relieve isolation and provide hope for the future.”
Ring20 Research & Support’s Conference will take place from Friday 30 October to Sunday 1 November.
To find out more, visit: www.ring20researchsupport.co.uk/for-families/families_conf_2026
About Ring20 Research & Support
Ring20 Research & Support was established in 2014 and is officially registered as a Charitable Incorporated Organisation (CIO) with the Charity Commission.
During the 2026 conference, Ring20 Research & Support will present their funded research on Understanding SUDEP and Managing Risk. See the study here: www.ring20researchsupport.co.uk/sudep_survey
Alongside her role at Ring20 Research & Support, Allison Watson, is also involved with UK Rare Epilepsies Together (UKRET), a network of patient support groups and charities representing all those affected by rare and complex epilepsies across the UK, working collaboratively to improve the overall quality of life for the communities they support. See: www.ukret.co.uk
Earlier this year, Allison Watson, CEO of Ring20 Research & Support, won the EURORDIS Volunteer Award for her remarkable leadership and unwavering commitment to improving the lives of people living with rare epilepsies. See: www.eurordis.org/black-pearl-awards/awardees
For more information on Ring20 Research & Support, visit: www.ring20researchsupport.co.uk
Find Ring20 Research & Support on social media:
Facebook: www.facebook.com/Ring20ResearchandSupportUK
Instagram: www.instagram.com/ring20epilepsy
LinkedIn: www.linkedin.com/company/ring20-research-support-uk
