We are delighted to share with you that we have been successful in securing funding from Pears Foundation and London Catalyst – a huge thanks to both for supporting this important initiative.
There are a wide variety of new technologies that are being developed to increase the accuracy of diagnosis and improve the management of epilepsy. In this blog we focus on just some of the medical devices and technologies available or being developed for self management of epilepsy.
Like most people I wanted to volunteer because of a desire to give back to the community and do something for the greater good.
Research has shown that patients and carers who live with a rare disease experience a negative impact on wellbeing and mental health.
Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives.
At Ring20, it has come to our attention that some individuals diagnosed with r(20) syndrome are not being offered the COVID-19 vaccine as part of priority group 6 within the UK. This appears to be due to GP's not classifying the individual as having epilepsy on their medical records - even though the individual has an r(20) diagnosis and is regularly prescribed anti-seizure medications (ASM's).
NEW!! We are excited to present two new information leaflets, one for parent/carers and one specifically for healthcare professionals:
Watch our Ring20 AGM 2020 and BIG ANNOUNCEMENT video here:
We’re very proud to present to you our r(20) patient information booklets, comic style, created by families, for families.
Read our latest newsletter #9 to see what's changing at Ring20 and what we have planned for the coming months ahead.
Your feedback is important to us and will help us shape what Ring20 looks like in the future.
Despite the fact rare diseases affect one in seventeen people, those affected tell Cambridge Rare Disease Network they’ve been all but forgotten during the last six months of the COVID-19 pandemic.
