Non-profit organisation supporting families, individuals and professionals who are affected by or who come into contact with Ring chromosome 20 syndrome - r(20)
UK
Joined April 2014
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If you want to help shape the future of Ring20 Research & Support UK’s services, this is your chance.
Please contact us through our website for the survey link.
The deadline to share your feedback is Friday 17 July.
Hashtags: #Ring20Epilepsy #Ring20Support #StrongerTogether
In June, we launched our Families Liaison Project. today, we’re speaking with Sarah, the project’s Families Liaison Officer, to learn more about the initiative and what she hopes to achieve in her role.
To read Sarah's story, please visit: ring20researchsupport.co.uk/…
We’re currently in the running to secure a £1,000 donation from the #MovementForGood campaign, but we need your free votes to boost our chances. Can you help.
Voting is free, quick and takes just a couple of minutes.
Visit: movementforgood.com/draws/10… to vote for @Ring20UK
💜 Members Engagement Survey 💜 Thank you to everyone who’s already taken part, your feedback is helping us shape future support for the #Ring20Epilepsy community.
Haven’t filled it in yet? We’d love to hear from you. Every response counts.
DM us for the survey link.
Living with an ultra‑rare disease can feel isolating, that’s why belonging matters. Our Families Conference brings families together in-person once again.
Join us on 1 Nov for a fun‑filled day with other Ring20 families.
More info & tickets: eventbrite.co.uk/e/ring20-fa…
We want to hear what matters most to the #Ring20Community. Please complete our Members Engagement Survey so we can keep improving the support we offer.
DM us for the survey link.
Deadline: 5pm, Wednesday 1 July
#EpilepsySupport #Ring20Support #Ring20Epilepsy #MakingADifference
Tickets are now available for our #Ring20 Families Conference at the @uniofwarwick, 30 Oct–1 Nov. We’d love to welcome families, researchers and healthcare professionals to join us.
Book here: eventbrite.co.uk/e/ring20-fa…
#Ring20Support #Ring20Research #Ring20Epilepsy
If anyone from the #Ring20Community would like to take part in the study, please visit: tinyurl.com/ESPERstudy
Hashtags: #Ring20Research #Ring20Epilepsy #EpilepsyAndSleep
A big thank you to everyone who has joined in with our #VolunteersWeek celebrations over the past seven days, your support means everything to us, those we support and of course, our #AmazingVolunteers!
If you would like to #VolunteerWithUs, visit: ring20researchsupport.co.uk/…
Today, we’re celebrating our incredible #Ring20 families. Living with an ultra‑rare condition can feel isolating, but together you’ve built a global community where no one faces Ring20 alone.
Hashtags: #VolunteersWeek #VolunteeringMatters #Ring20Epilepsy #MakingADifference
For #VolunteersWeek, we’re celebrating Clara who is one of our amazing trustees. Clara first discovered our charity through @CharityJob and without the platform, we may never have met her. Read her #volunteering story here: ring20researchsupport.co.uk/…
If you can help, please get in touch.
Hashtags: #VolunteersWeek #VolunteerWithUs #VolunteerTranslator #TranslationForGood #Ring20Epilepsy
Various members of UK Rare Epilepsies Together (UKRET) network were out in force yesterday at the Aspire Biosciences CNS Networking event.
Encouraging to hear new pharma interest in rare epilepsies and innovative research ideas to improve treatment innovation for rare diseases. – at London, England
As part of today’s #VolunteersWeek post, we interviewed Kallif, one of our longest‑serving volunteers, to learn why he chose to #volunteer with us. Read the full interview here: ring20researchsupport.co.uk/…
On Saturday 20 June, @LauraCr94777466 will be hosting an evening on transforming #RareDiseaseResearch for children in Queensland.
To learn more, visit: events.humanitix.com/from-on…
Hashtags: #RareDisease #RareEpilepsy #GeneticEpilepsy #Genomics #RNAtherapeutics #HealthEquity
As a patient support group we are putting r(20) on the map – quite literally!
If you would like to be added to the map, please visit: ring20researchsupport.co.uk/…
Hashtags: #Ring20Community #Ring20Epilepsy #RareEpilepsy #Ring20Research
We’re delighted to share that our Family Liaison Project will be launching in the coming weeks!
To learn more, please visit: ring20researchsupport.co.uk/…
Hashtags: #Ring20Epilepsy #RareEpilepsy #Ring20Community #EpilepsySupport
If you haven’t already completed our Understanding #SUDEP and Managing Risk survey, we’d be grateful if you could take part. Your input will help us to create more vital research for the #Ring20Epilepsy community.
Visit: app.onlinesurveys.jisc.ac.uk… to get involved.
Our research paper, “Management of ring chromosome 20 syndrome: Narrative review and consensus recommendations,” is now published!
Read the full study in full here: onlinelibrary.wiley.com/doi/…
Hashtags: #Ring20Research #EpilepsyResearch #RareDiseaseResearch #Ring20Epilepsy
We still need more #Ring20 patients & families to complete our “Understanding #SUDEP and Managing Risk” survey.
Your input will help shape vital recommendations to reduce SUDEP risk in the Ring20 community. Fill out the survey: app.onlinesurveys.jisc.ac.uk…
Need the password? DM us.
