Wales Cross Party Group on Rare, Genetic and Undiagnosed Conditions

Mae’r cynnwys hwn wedi dod o wefan allanol ac mae ar gael yn Saesneg yn unig

Collectively, rare diseases are not rare. In Wales around 175 000 people are affected by a rare disease at some point in their life – that’s around one in 17 people. Rare, genetic and undiagnosed conditions are often life-long and serious, affecting multiple systems of the body. On average it takes four years for someone with a rare condition to receive an accurate diagnosis and most rare conditions have no effective treatment.

Mike Hedges MS will be hosting a virtual meeting for parliamentarians to discuss challenges for people with rare conditions. This meeting will hold the AGM for the cross party group.

The online meeting will see the announcement of the Wales Rare Disease Action Plan. It is a landmark policy paper setting out how the Department of Health and Social Care and delivery partners will implement the UK Rare Diseases Framework in Wales.