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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.
