On the run up to an announcement on the Wales Rare Disease Action Plan – a major policy paper setting out how the UK Department of Health and Social Care will implement the UK Rare Diseases Framework in Wales – journalist Phil Parry, is one of a number of HSP Support Group members in Wales invited to attend a cross-party meeting, discussing certain rare diseases.
In an article for The Eye, he considers what it means to have a rare disease and the issues faced by those with HSP in their day-to-day lives.
“The challenges faced by people with disability are legion, and the whole thing is an issue very close to my heart, as I know them only too well!”
Read it in full here: Home affairs
Find out more about the meeting: Welsh Cross Party Group at Senedd