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Promoting research, education and continuous support to end undiagnosed and misdiagnosed

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.


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


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

Jaevin’s Story

Jaevin’s epilepsy has gotten worse over the years. He has been induced in several comas every year since 2015 n the ICU for status epilepticus for several days at a time until the neuro team found a concoction of medication that would calm his seizures down.

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Diana Wagner

Diana’s Story

It just didn’t make sense, the constant tiredness, being lost in school, the pauses when she talked. I had never seen anything like that.

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