Local Assembly Member Paul Davies has recently attended a reception to increase awareness of rare diseases and highlight the issues affecting patients and families across Wales. The 14th international Rare Disease Day will take place on 28 February 2020 an in order to mark the day and raise the profile of rare diseases, Rare Disease UK and neighbouring Assembly Member Angela Burns held a reception to learn more about how patients and their families can be better supported.
Speaking from the event, Mr Davies said “The Rare Diseases Day reception was a timely reminder to us all that those living with a rare condition face a range of challenges and it’s crucial now that we work together to ensure that they receive the support that they need. Sometimes the symptoms of a rare disease can be misunderstood and that can result in patients not receiving the right support for them. Sadly, rare diseases are usually life-long and they can affect multiple systems of the body and that’s why we need to redouble our efforts and better understand how we can support those living with a rare disease in Wales. This reception was a good opportunity to learn more about some of the issues that patients face and I look forward to working with Rare Disease UK and others to help deliver better support for patients in the future.”