On 27 February 2019, Catherine was elected as Chair of the All Party Parliamentary Group (APPG) on Rare, Genetic and Undiagnosed Conditions. This group aims to increase awareness of rare conditions in Parliament and help ensure that patients and families affected by these conditions have access to appropriate care, support and treatment.
There are more than 6,000 rare conditions, which are often life-long, and can affect multiple systems of the body. Many are progressive, meaning affected individuals lose their health and quality of life, and some may die prematurely. Around 6,000 children are born in the UK each year with a genetic condition, so rare that it is likely to remain undiagnosed.
Chances are you will know someone affected by a rare condition. In the UK, approximately 3.5 million people (1 in 17) will be affected by a rare condition during their lifetime; that’s around 5,000 people in Hornsey and Wood Green alone! That’s why Catherine hosted a reception in Parliament to mark international Rare Disease Day. Catherine welcomed over 180 attendees including 25 parliamentarians. The reception was a great opportunity for patients and families to share their experiences of living with a rare condition. The Minister in charge of rare diseases, Baroness Nicola Blackwood, was also in attendance.
Over the coming months, Catherine will be leading the APPG to understand and address the barriers facing rare disease patients when accessing medicines and appropriate social care support.
You can read the minutes from the meeting here: https://www.geneticalliance.org.uk/wp-content/uploads/2019/03/APPG-minutes-27.2.19-2.pdf
For more information, please visit: https://www.geneticalliance.org.uk/appg/