Ring20 Research and Support UK CIO

Ring20 Research and Support UK CIO

At a glance

Causes

  • Children / families
  • Health and well being / research and care
  • Mental health
  • Young people

Other details

Organisation type: 
Charity
Geographical remit: 
National - Britain

Objectives

We preserve and protect health by a) providing advice and information to Ring Chromosome 20 Syndrome (epilepsy) patients and their families b) providing information to the public c)Supporting medical professionals in their understanding of Ring Chromosome 20 Syndrome, its diagnosis and treatment;d)Supporting research into the condition, its causes and improving the outcomes for those suffering with the condition and promoting the dissemination of the useful results of such research.

Activities

Our information service helps improve understanding of the diagnosis and current treatments for those with Ring Chromosome 20 Syndrome or r(20) - an ultra rare disease, the main symptom being difficult to treat epilepsy associated with cognitive decline and behavioural issues.

We provide support by phone, email, online communities and occasional face-to-face meetings, helping patients and families affected by the condition. We attend medical conferences to heighten awareness of r(20) among health professionals, since r(20) is perceived to be under diagnosed and under reported and we maintain a website signposting to the latest information on the disease.

No other organisation provides this resource and support service - we support patients, families and health professionals worldwide.

We plan to aid research into the condition and its causes and treatments by seeking funding for research projects and actively engaging as a partner in relevant research.

Current opportunities

London (Central), BH16 6FA

Ring20 promotes research, education and continuous support to end undiagnosed and misdiagnosed Ring20 epilepsy syndrome. We are seeking a Trustee...