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Virtual Parliamentary Event

Rare Disease Day is an opportunity for the rare community to come together to raise awareness of the common issues affecting those living with rare conditions.

Each year we organise parliamentary events to mark the occasion. Unfortunately this year we can’t meet in person. However, we are determined to make 2021 count. That’s why we’re hosting a UK-wide virtual event to mark the day.

 

What is it about?

We’ll be hearing from people affected by rare conditions,  exploring the UK’s Rare Diseases Framework which promises to improve the lives of all those affected by rare conditions, and hearing from health ministers from across the UK about how they are planning to implement the Framework in their nation.

Seats from Parliament

When will it be?

The meeting will take place on Wednesday 24 February over Zoom. A draft agenda for the day can be found below.

How do I register?

To register for the meeting please click HERE

Agenda

10.00 Scotland

  • Jayne Spink, CEO, Genetic Alliance UK
  • Bob Doris MSP, Chair of the CPG on Rare, Genetic and Undiagnosed Conditions
  • Sophie Dow, Patient speaker
  • Mairi Gougeon MSP, Minister for Public Health, Sport and Wellbeing
  • Bob Doris, Chair of the CPG on Rare, Genetic and Undiagnosed Conditions

 

10.30 England

  • Liz Twist MP, Chair of the APPG on Rare, Genetic and Undiagnosed Conditions
  • Genevieve Allum, Patient Speaker
  • Lord Bethell of Romford, Parliamentary Under Secretary of State (Minister for Innovation)
  • Liz Twist MP, Chair of the APPG on Rare, Genetic and Undiagnosed Conditions

 

11.00 Wales

  • Angela Burns MS, Chair of the CPG on Rare, Genetic and Undiagnosed Conditions
  • Emma Fitzpatrick, Patient Speaker
  • Hayley Cleaver, Patient Speaker
  • Baroness Eluned Morgan MS, Minister for Mental Health, Wellbeing and Welsh Language
  • Angela Burns MS, Chair of the CPG on Rare, Genetic and Undiagnosed Condition

 

11.30 Northern Ireland

  • Mark H Durkan MLA, Chair of the All Party Working Group for Muscular Dystrophy
  • Rosaline Callaghan, Patient Speaker
  • Robin Swann, Minister of Health
  • Rhoda Walker, Chair, Northern Ireland Rare Disease Partnership
  • Jayne Spink, CEO, Genetic Alliance UK

 

12.00 CLOSE

 

For more information please contact [email protected]

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