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Griffin’s story – updated for National Epilepsy Month 2025
A Strong and Brave Future Two years ago Griffin lived a passionate and energetic life. His parents described his life as ‘normal, active and beautifully
Ring20 Support Services
Welcome to our families section, where you can find information and practical support with managing r(20).
At Ring20 our mission is to support you through the challenges of living with r(20) syndrome and to reassure you that you and your family are not alone in this struggle. Our community is here to support you every step of the way. Click on the images below to see the support services we provide.
Helpline
Contact us via phone or email for general enquiries and/or direct 1:1 support from our dedicated team.
Welcome Pack
New to the Ring20 Community? Pick up a Welcome Pack to find out what support we can offer you and your family
Stay informed
If you haven’t already done so, please take a few moments to sign up to our mailing list to receive our regular newsletters.
Coffee and Chat
Take time out to share your experiences in our regular video calls. Meet other Ring20 families and benefit from mutual support – you are not alone!
Ring20 Community
Here at Ring20 we recognise that having an ultra-rare disease diagnosis can feel isolating. A key aim of ours is to connect families together wherever they live in the world.
Here’s some of the ways we can connect you…
Facebook Forum
Join our CLOSED Facebook group purely for individuals over 18 years living with r(20) and their parent/carers to connect and share experiences in a safe space
Facebook Japan
日本語のプライベートのRing20のフェイスブックグループです。参加希望の方はリクエストをお願いいたします。安心して皆さんがお互いに体験や思いをシェアできる場を目指しています。
non-English speakers
…no problem!
Join our RareConnect Community Forum with automatic and human translation in 13 different languages
r(20) on the map
We are plotting known cases of r(20) around the world onto our own Google map to highlight the number of known cases and their location. Join or update the map here.
Family Events
Every few years we endeavour to to create events to bring together our Ring20 families, with the aim of educating, informing and networking. The events are about r(20) syndrome, created by-families-for-families.
Your Stories
Read More
Ann’s story – One parent’s perspective
For Ann, being a mother has meant walking beside her daughter through the unpredictable world of Ring Chromosome 20 syndrome. From the first signs to
Ezra’s story
Every family living with r(20) has a rhythm, a daily routine built by love and patience. This story will focus on 16-year-old Ezra and how
