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  • Writer's pictureThe British Polio Fellowship

Rare Disease Day 2024

Thursday 29 February is Rare Disease Day, raising the awareness of people affected by rare conditions and the challenges faced.


Kripen Dhrona, Chief Executive Officer for The British Polio Fellowship joined support organisations, clinicians, parliamentarians, and industry representatives at a parliamentary reception to mark Rare Disease Day in the House of Commons, London.


There are around 7,000 rare conditions and over 3.5 million people in the UK are living with one. Polio and post-polio syndrome (PPS) are now considered to be a rare disease, not because of the condition itself, but because of the numbers affected. People with polio, late-effects of polio and PPS and their families, can face a lifetime of complex care.


This year’s Rare Disease Day event provided an opportunity to look to the future of policy for rare conditions. Liz Twist MP, Chair of the All Party Parliamentary Group (APPG) on Rare, Genetic and Undiagnosed Conditions welcomed everyone and introduced speeches from Grant Finney, the brother of Jess, a person affected by a rare condition (Klippel Trenaunay Syndrome) and how it has impacted their family.


Andrew Stephenson, Minister for Health and Secondary Care launched the England 2024 Rare Disease Action Plan and Louise Fish, Chief Executive, Genetic Alliance UK introduced the Genetic Alliance UK Rare Disease Day 2024 report which looks at the stories behind the statistics.


The 2024 England Rare Diseases Action Plan: reports on progress against the UK Government's existing 29 actions as well as introducing 7 new actions to improve the lives of people with rare diseases for the year ahead https://www.gov.uk/government/publications/england-rare-diseases-action-plan-2024#:~:text=The%202024%20England%20Rare%20Diseases,diseases%20for%20the%20year%20ahead

Genetic Alliance UK Rare Disease Day 2024 report: aims to raise awareness of statistics among the public and among healthcare professionals, but it also shares some of the stories behind those statistics: https://geneticalliance.org.uk/campaigns-and-research/rare-disease-day/stats-behind-the-stories/

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