Ring20 Research & Support UK CIO
Healthcare Facility/Healthcare Services - N/A, N/A, UK
Ring20 Research & Support UK CIO Employees
Ring20 Research & Support UK CIO Senior Management
Ring20 Research & Support UK CIO Details
Ring 20 Knowledge BaseOne 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 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.Our patient support group forum is available on Facebook for all patients and their families affected by r(20) to connect with each other and share thoughts and experiences, in a secure environment.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 11 European languages including: Spanish, French, German, Portuguese, Italian, English – so we can reach out to families across the world.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.
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