Latest news and updates

We were joined yesterday at our Community check-in by Dr Liz Whittaker, infectious disease lead at RCPCH, and Senior Clinical Lecturer in paediatric infectious diseases and immunology at Imperial College London to discuss the current situation regarding Covid-19, the risks for children with rare conditions and whether they should be offered the...

A summary of discussion about Covid-19 in Westminster, Holyrood and the Senedd between 8-15 July 2021.

Most Covid-19 restrictions in Scotland have now been lifted but we know that the rare disease community still face challenges with diagnosis, care coordination, access to specialist care, treatment and drugs. Genetic Alliance UK is supporting the Scottish Government to develop and implement a new Action Plan for Rare Diseases in Scotland – and they...

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...

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...

Heather Delaney tells us what the first and second lockdown have been like for her, the challenges she has experienced and the lessons learned.

The three vaccines are effective and safe with adverse reactions that, when present, are usually mild and resolved within a few days after administration.

New guidance priorities clinically extremely vulnerable individuals for Covid-19 vaccine.