Our Community


Welcome to Ring20.


We have lots of ways in which you can stay updated, we encourage you to look at our resources to get support and to get involved. Here are just a few to get you started:

Mailing list
As a member of Ring20 Research and Support UK CIO you will receive regular (monthly)
enews via email and a biannual newsletter from us about all things r(20) related.
Sign up here: its FREE and you can unsubscribe at any time.

Social Media
To keep up with events as they happen, you can find our latest news and activities here:
Please LIKE us on Facebook
Follow us on Twitter
or LinkedIn

We also encourage you to visit Our Communities page for more information on joining in.

In conjunction with Prof Sameer Zuberi (our Chief Medical Advisor) and EpiCARE we have produced an information leaflet for patients and their caregivers comprising the 10 most typically asked questions:

We hope this resource is particularly useful for any families who have recently received an r(20) diagnosis.

Our patient information comics are available to download, or you may request printed copies by emailing us at [email protected]

PDF icon Growing up with r(20) syndrome

This is the second in a series of 2 comics. You can also download Life with r(20) syndrome: The Early Years to explore the challenges of being a child diagnosed with r(20) syndrome.

Our patient information comics are available to download, or you may request printed copies by emailing us at [email protected]

PDF icon Life with r(20) syndrome: The Early Years

This is the first in a series of 2 comics. You can also download Growing up with r(20) syndrome to explore the challenges of becoming an adult.

You can also dive into our research Section and examine medical information and research into r(20).

We’ll send you some more details about how you can connect with other r(20) families, in a few weeks’ time when you get settled. In the meantime, if there’s anything you need to know, please feel free to contact us at [email protected]

Here’s how you can connect with other r(20) families for mutual support:

Ring20 Patient Support (private group)
Our patient support group forum is available to all patients and their families
affected by r(20), allowing them to connect with each other and share
thoughts and experiences in a secure environment.
Request to join here:

RareConnect Ring Chromosome 20 Forum
We also operate a separate support group forum on RareConnect for r(20)
families to talk to each other in confidence. The difference here is that any
posts or information can be translated into any of 12 languages including:
Spanish, French, German, Portuguese, Italian, Czech, Serb/Croatian, Ukrainian,
Russian, Persian, Japanese – so we can reach out to a wider audience.
Request to join here:

We organise an annual family conference to educate, inform and network.

The event includes Updates about rare disease research from world experts in r(20) syndrome

Hearing from key speakers directly affected by rare disease

An opportunity to talk with researchers and professionals. 

To connect with other patients and carers

Family Event dinner

Fun Social activity 

With representatives from the Rare Disease Community, patients, charities and researchers the event offers fantastic opportunities for networking, new learning and information sharing.
Further details about the next event will be published shortly.