General News and updates
Long covid and the remarkable parallels with rare diseases
People living with rare conditions have already commented on parallels between the sudden restrictions the pandemic placed on our all lives – and the reality for many who are living with a rare condition. The isolation of lockdown, anxiety about being able to access healthcare and about the lack of effective treatments, have weighed heavy on so many...
What is it like to live with a PANS/PANDAS child in lockdown?
The beginning of our journey Three years ago, our daughter had glandular fever (EBV) and soon after developed obsessive-compulsive disorder (OCD) symptoms with intrusive thoughts. Following this, she had a ruptured ovarian cyst which hospitalised her and she subsequently suffered a strep infection and developed vocal/motor tics. Moreover a further symptom...
My lockdown journey
Heather Delaney tells us what the first and second lockdown have been like for her, the challenges she has experienced and the lessons learned.
Are the Covid-19 vaccines safe?
The three vaccines are effective and safe with adverse reactions that, when present, are usually mild and resolved within a few days after administration.
Updated Covid-19 vaccination priority order
New guidance priorities clinically extremely vulnerable individuals for Covid-19 vaccine.
Who should be prioritised for Covid-19 Vaccine?
Genetic Alliance UK recommends that people with genetic, rare and undiagnosed conditions be prioritised for Covid-19 vaccine.
Lockdown 2.0 - here we go again
Clare talks about the decisions her family has to make to keep their extremely clinically vulnerable son safe during the new lockdown.