Carmarthen West and South Pembrokeshire Assembly Member and Shadow Health Minister Angela Burns recently launched the Cross Party Group on Rare, Genetic and Undiagnosed Conditions in the Welsh Assembly.
The Cross Party Group which is supported by the Genetic Alliance, aims to raise the profile of rare diseases and provide a platform for physicians, patients and their families to help shape Welsh health policy.
The first meeting was held at the start of October and heard contributions focusing on the mutual health challenges faced by people with a rare or undiagnosed conditions.
The group will continue to meet regularly and is keen to hear from members of the public who are living with a rare, genetic or undiagnosed condition.
Speaking following the meeting Angela said
“I am pleased that we have managed to launch this group. It is vital that everyone’s voices are heard. Having a rare disease or undiagnosed condition is not a reason to have poorer standards of care or support.
“The Group will be a platform to hear from experts, patients and their families and for politicians to learn more about not only the diseases but the challenges of living with such conditions.
“I look forward to moving this issue forward over the coming months and I am grateful for the support of the Genetic alliance in helping to get this group off the ground.”
Picture Attached : Angela Burns AM chairing Rare Diseases Cross Party Group.