Ring20UK

We're supportive of this new standard to be implemented for people with epilepsy which includes people living with r(20) syndrome. Change happens when standard are adopted and utilised in practice. Let's get NHS services behind this, work together for better lives with #epilepsy.

We are at a pivotal moment at Ring20 and we have some exciting announcements coming in the next few weeks... a stronger team, research news, and new opportunities to connect. We're fighting back, more resilient than ever! #RareDiseaseDay #rarequity #r20 #epilepsyawareness

Watch our CEO Allison Watson, receive her award LIVE, Tue 24th February. Registration for ONLINE ATTENDANCE is completely free of charge and will remain open until the event! Registration link: eurordis.org/black-pearl-aw… #EURORDISAwards2026 #RareDiseaseDay

Such an open and free flowing conversation, we could have talked all day! The journey families face after their child receives a rare #epilepsydiagnosis is often a path uncharted. 🎙️Recording a new podcast for @youngepilepsy to inspire hope and help families connect for support

🙏to the support from @PostcodeLottery funds raised by players of People’s Postcode Lottery are enabling us to hire a dedicated Family Liaison Officer. This will make a real difference to families navigating life with a rare genetic epilepsy, helping ensuring no one feels alone.

@BrainAblaze r(20) syndrome - one of >100 rare epilepsies nobody talks about. Even people living with epilepsy don’t know about rare causes of epilepsy, unless they’ve already received a diagnosis. And HCPs need wider awareness of the epilepsies too!!!

If you’re in the Uk, aged 15 or under and have a diagnosis of r(20) we strongly encourage you to sign up to D-CYPHR to help your future health outcomes and this of this who come after you. #DCYPHR #raredisease #r20

It’s all about the connections you make… The power of patient representation has been evident at #FOG2026 A thoughtful journey home and much to contemplate for follow up…when energies are replenished. #genomics #biodata #r20 #epilepsy #rarediseaseawareness

End Day 2 at #FOG2026 🧬 and we’re privileged to hear a fireside chat with Stephen Fry. A full day of conversations, learning and relationship building seeking new avenues for collaboration to change the narrative for people living with r(20) syndrome and rare epilepsies. #r20

#FOG2026 Need we say more? Be part of the conversation #genomics #ringchromosomes #r20 #RareDisease #awareness

Kicking off #FOG2026 Great keynote fm Dame Sue Hill calling out the importance of incl patients/patient groups in our future for genomics 🧬 > 8,000 delegates and our piece on r(20) has made it into the programme #ringchromosomes #structuralvariants #RareDisease

Have a question you'd like Allison to answer during her session? Drop it in the comments or message us, we’d love to hear your thoughts.

Join our CEO 28 Jan @12pm Live Lounge to hear 'The Chromosomes that NGS forgot…” Let's talk about structural variants/ring chromosomes and patient advocacy in rare disease Sneak peek: frontlinegenomics.com/extended-qa-wi… #FOG2026 #genomics #chromsomes #structuralvariants #ringchromsomes #r20

@BrainAblaze Focal impaired awareness seizures strongly associated with ring chromosome 20 syndrome (r(20)) are often described by individuals as hallucagenic with individuals exhibiting fear or describing frightening things eg black holes, sharks, spiders, fire ring20researchsupport.co.uk/types-of-seizu…

Visual distortions (or even hallucinations) are common symptoms of #epilepsy as the seizure moves through different areas of the brain. -- What's the strangest thing you’ve seen during a seizure? #EpilepsyAwareness

Seeking a compassionate and organised Families Liaison Officer to place family support at the heart of our work. Creating a primary point of contact for families affected by r(20) epilepsy providing responsive, consistent and safeguarding-aware support. 👉ring20researchsupport.co.uk/careers/

For families living with ring 20 chromosome syndrome, diagnosis offers few answers and little relief. With science unable to reveal the genomic change behind the syndrome’s symptoms, patients endure a trial-and-error approach to care. Founder Allison Watson and the Ring20 Research and Support charity are championing a future where a true diagnosis and targeted therapies can one day transform care for this ultra-rare condition. Read more here: bit.ly/Undiagnosed-Il… #RAREAndUndiagnosed #SWAN #Undiagnosed #RareDisease #R20 #Ring20 @illumina @Ring20UK

Our CEO explores the diagnostic gap and why a more accurate diagnosis is needed to enable research into better treatments and precision medicine. “Is a diagnosis actually a diagnosis - or just a symptom” @illumina @Dr_Rhys

For families living with r20 answers don’t always come neatly labelled. As advances in genetic sequencing continue families are left to navigate uncertainty without clear answers or support. 🔗Read more: bit.ly/Undiagnosed-Il… @RareRevolutionM #RareDisease #Undiagnosed #Ring20

Read the the difference YOUR help has enabled us to make We believe, no family should face r(20) alone. Ring20 are here for you TOGETHER we can make a brighter future for r(20)🙏 📑Read our Impact Report: ring20researchsupport.co.uk/2025/12/impact… #r20 #epilepsy #impactinglives #makingadifferencee

Proudly representing the rare disease community with Amy Hunter Claire Andersen and Mel Dixon at the Rare Therapies event. The day was superbly hosted by @suehillofficial involving stakeholders involved in the end to end process, from therapy dev to service delivery in the NHS.