Rare Disease Day 2018 - Scottish Parliamentary Reception

The annual reception, hosted by Bob Doris MSP, will be held on 20 February at the Scottish Parliament Garden Lobby, Scottish Parliament – 18:00 to 20:00.

Rare Disease Day, which is recognised by countries around the world, aims to raise awareness about rare diseases and their impact on patients and their families. 

The reception will include an update on progress being made to implement the Scottish Rare Disease Plan and other developments affecting rare disease patients and families.

Speakers include:

  • Dr Jayne Spink, Chair of Rare Disease UK and Chief Executive of Genetic Alliance UK
  • Rebecca Pender, Inverted duplication/deletion syndrome 8p
  • Professor Zosia Miedzybrodzka, Professor of Medical Genetics at the University of Aberdeen
  • Shona Robison MSP, Cabinet Secretary for Health and Wellbeing
  • Professor Faisal Ahmed, Project Lead for the Office for Rare Conditions (Glasgow)
  • Arlene Smyth, Executive Officer for the Turner Syndrome Support Society                                                                                                                     

Registration is now open and you can register to attend here.

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