Non-profit organisation supporting families, individuals and professionals who are affected by or who come into contact with Ring chromosome 20 syndrome - r(20)
Joined April 2014
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1,251 Photos and videos
If anyone from the #Ring20Community would like to take part in the study, please visit: tinyurl.com/ESPERstudy
Hashtags: #Ring20Research #Ring20Epilepsy #EpilepsyAndSleep
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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/…
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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
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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/…
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If you can help, please get in touch.
Hashtags: #VolunteersWeek #VolunteerWithUs #VolunteerTranslator #TranslationForGood #Ring20Epilepsy
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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.
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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/…
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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
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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
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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
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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.
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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
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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.
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What is an ultra‑rare disease?
Watch the video to learn more. A big thank you to @eurordis for interviewing Ring20 CEO and co-founder Allison on this important topic.
Hashtags: #Ring20Awareness #Ring20Epilepsy #RareEpilepsyAwareness #RareDiseases
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Supporting a young person with #Ring20 can be challenging for families, especially when there is more than one dependent within the household.
Learn more about Ezra and his family’s story here: ring20researchsupport.co.uk/…
Hashtags: #RareDiseaseParenting #ParentCareGiver
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@matthewsfriends @UK_IS_T @foundation_sgs @curedravet @RettUK @CASKResearch We'd be so grateful with you could share the above on your social media channels.
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@epilepsy_scot @epilepsysociety @EpilepsyInst @LondonAction @SudepAction @Unique_charity we would be so grateful if you could share the above.
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What a fantastic statistic to share from our recent webinar, where we launched our Understanding #SUDEP and Managing Risk study. If you missed the session and would like to catch up, the webinar can be found on our YouTube channel here: youtu.be/cu2Mr_VACnk?si=sRti…
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