RING 20 Support Group Forum

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Our patient support group forum is available on Facebook for all patients and their families affected by (20) to connect with each other and share thoughts and experiences, in a secure environment.

You can find the group here.

For privacy we operate this as a CLOSED group. You may request to join this Facebook group once you have completed a joining form for us here.

We encourage you to post your r(20) related questions/concerns and share your personal stories, both good and not so, with other families affected by the condition around the world. Share photos and any relevant events with the group.
This is a closed group so all posts are only shared with invited members. Posts will be moderated for appropriate content.

r(20) Support (6 European languages)

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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 6 European languages including: Spanish, French, German, Portuguese, Italian, English – so we can reach out to a wider audience.

You can find this group here.

We have a number of eminent neurologists with a special interest in r(20) syndrome following this forum.

CODE OF CONDUCT
Members will be respectful of each other when posting.
Posts will be moderated for appropriate content. Inappropriate posts will be deleted/removed and you may be banned from the group.

Support Others

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We are always looking to our members and supporters for help when it comes to fundraising, organising events, or hosting a stand/attending conferences, as well as practical skills like; writing fund/grant applications, social media updating, as well as printing educational resources and materials.
You may have a skill that would be useful to the day-to-day running of the group, or simply some spare time to offer your support for a specific project (support/training can be provided, if necessary).
So please do get in touch with us if you would like to help, or know someone who may be able to. Please email us

Ring 20 Knowledge Base

One of our objectives at Ring20 Research Support UK is to identify and participate/help fund research in the future as a patient support group cohort. We are very keen to establish links between professionals and potential subjects looking at areas such as epidemiology, clinical outcomes and treatment protocols.

You can read more about the current work at The Children’s Hospital of Philadelphia and Dr Spinner’s latest research findings in the Knowledge base section of the home page under Genetics of r(20) syndrome.
View our Ring 20 Knowledge Base 

USEFUL LINKS

These links are for information only, not an endorsement of any group. Ring20 Research and support UK is not responsible for the content of external websites.

Disability Rights UK

We produce high quality information, products and services developed by and for disabled people. We partner with the private and public sector, with the aim of improving business practices. Website: http://disabilityrightsuk.org/

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Maxwell Gillott

We provide an expert legal service to help parents put their case for additional assistance and for appropriate education. The child’s needs must always come fist, so we take care to work alongside their school wherever possible, to develop a partnership in the child’s interest. We also work alongside any

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SOS!SEN

SOS!SEN offers free, friendly, independant and confidential support for parents and carers of children with special educational needs (SEN). Based near Hamptomn Court, Surrey we offer services throughout England and Wales. Website: www.sossen.org.uk Helpline 020 8538 3731

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Epilepsy Action

Provides free and confidential email and Freephone (0808 800 5050) helplines offering advice and information on the condition, its treatment and a wide range of associated issues. It has Europe’s most visited epilepsy website and produces a wide range of information booklets, fact sheets and other resources. (UK) Visit EPILESPY

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Matthew’s Friends

Matthew’s Friends aim is to bring the latest information possible on all aspects of dietary treatments for epilepsy straight from the leading experts in the UK and around the globe. www.matthewsfriends.org  

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