Background to the day Rare Disease Day Wales has become an important highlight of my calendar and this year’s event was no exception. In February each year Rare Disease UK organize receptions across Britain to highlight the importance of Rare Diseases to health professionals, politicians and patients alike. Rare Disease Day is officially celebrated on
More Information
We are holding our first ever PCD Day in Scotland on Saturday, 13th May 2017 at the Venue Studios, 67 Hope Street, Glasgow G2 6AE from 10.30 a.m. to 4 p.m. This is an opportunity to learn more about PCD and meet other families affected by the condition. We hold a number of talks throughout
More Information
Last week a 15 week public consultation was launched concerning NHS England’s planned decommissioning of Royal Brompton & Harefield NHS Foundation Trust’s (RBHT) Congenital Heart Disease (CHD) service. Why is NHS England planning to close these CHD services? The decision by NHS England to decommission CHD services at RBHT is because they believe that hospitals
More Information
Two of our Scottish PCD Families visited the Centre for Integrative Physiology at the University of Edinburgh and had a very warm welcome by senior lecturing staff and some of their research teams (Dr. Thomas Theil investigating the molecular mechanisms that control cortical patterning and Professor Andrew Jarman studying the relatively simple nervous system of the
More Information
The European Lung Foundation are looking for several individuals to get involved in sharing their experiences of cardiopulmonary exercise testing to an ERS Task force which is developing a technical standard which will set out the best way to complete exercise testing for people with a chronic lung condition. Please read the full details ELF
More Information
Covid-19 is very unsettling for all of our PCD community – we will be regularly updating this page with latest information and ideas on how to keep yourselves entertained whilst self-isolating.