Families from Pembrokeshire met with Paul Davies AM this month to mark Cystic Fibrosis Week at an event at the Welsh Assembly.
Caroline Willis who has two children with cystic fibrosis said:
"I was able to meet my AM and tell them about some of the issues that affect my family living with cystic fibrosis."
Kayleigh Old, Public Affairs Officer for the Cystic Fibrosis Trust said:
"This event allowed us to raise awareness among Welsh policy makers about the work of the Cystic Fibrosis Trust and highlight any issues affecting cystic fibrosis services in Wales. We were also able to alert the Health Minister to the consultation we will launch on 24 June in to improving rates of transplant for people with cystic fibrosis."
Paul Davies said, "I was delighted to attend this important event and meet with families affected by cystic fibrosis. It's essential that the Welsh Government now listens to the views of those who are affected by cystic fibrosis and invests in new treatments and better clinical care."
This year Cystic Fibrosis Week is focussed on transplants for people with cystic fibrosis. Every year a third of people with cystic fibrosis die waiting for a transplant and the wait can be agonisingly long. New treatments and better clinical care are helping people with cystic fibrosis to live longer but the vast majority will suffer irreparable lung damage. Many people will reach a point where the only treatment option left is a lung transplant. The Cystic Fibrosis Trust is using CF Week to highlight the issues that impact on why a person does not receive their transplant in time. An open consultation will be launched to explore how transplantation rates can be improved for people with cystic fibrosis.
Money raised from the events will enable the Cystic Fibrosis Trust to invest in cutting-edge research to develop better treatments and, ultimately find a cure. It will also provide support to those with cystic fibrosis and their families and help the Trust to drive up standards in clinical care.
