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.
Making genomic understanding of Ring Chromosome 20 Syndrome possible
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: