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.
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.
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.
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.
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.
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