Rare Disease Day 28th February 2023
Genetic Alliance UK Westminster Reception.
Liz Twist MP hosted a reception at Westminster for Rare Disease Day. She is the Chair of the Rare Diseases All Party Parliamentary Group.
This was the first time an in-person reception has been held for a number of years.
The theme for this year was highlighting the benefits of co-ordination care for those affected by Rare Disease. Genetic Alliance UK released a Report on the subject. The link to the report is below.
Care coordination report 2023 | Genetic Alliance UK
Louise Fish, Chief Executive of Genetic Alliance UK, welcomed everyone and spoke about the importance of care co ordination and what they had learnt from those people living with rare conditions. Blessing Abdul shared her own experiences of living with Sickle Cell Disease and a rare lymphoma and Helen Whately, Minster for Social Care talked about her role in introducing the England 2023 Rare Disease Action Plan.
Another key issue highlighted were the difficulties around transition of care from paediatrics to adult care. We know this is a huge issue for many affected by rare conditions, including our 22q11.2 Syndromes community. If you have the opportunity to highlight these subjects with your own MP’s please raise them and highlight the above report.
All the issues included here need to have priority https://www.england.nhs.uk/about/equality/equality-hub/national-healthcare-inequalities-improvement-programme/core20plus5/
Lots of UK genetic charities who are members of Genetic Alliance UK are working on these issues, including Max Appeal. Below, a group of colleagues who have been supporting each other, finally get to meet each other, as we usually hold our communications on Zoom calls.
Sophie and Sarah from Unique have worked with Max Appeal and other genetic charities to highlight
the issues raised by the recent proposed Downs Syndromes Bill, now Downs Syndrome Act and the issues relating to New Born Screening processes in the UK.
Staff members of Genetic Alliance UK who have helped us all to raise awareness of the issues affecting those living with genetic conditions.
1st March, 2023
