Genetic Alliance UK Chair Elizabeth Porterfield awarded an MBE

Genetic Alliance UK’s Chair Elizabeth (Liz) Porterfeld has been awarded a Member of the Order of the British Empire (MBE) for services to people with rare diseases in the King’s Birthday Honours List on Saturday 15 June, 2024.

This award recognises many years of service to improve the lives of people affected by rare and genetic conditions, driven by Liz’s personal experience of caring for her late son who had Huntington’s Disease. Prior to retiring, Liz was Head, Strategic Planning and Clinical Priorities with the Scottish Government Health & Social Care Directorates. She led the development of several clinical strategies including the National Clinical Strategy, the Cancer Strategy and the first Scottish Rare Disease Plan. She was a member of the implementation group and of the UK Rare Disease Forum. She was the Government sponsor of Scotland’s National Services Division which commissions all national (including across UK) specialist and screening services. Liz contributed to the establishment of the Innovative Healthcare Delivery Programme (IHDP) and the Scottish Genomes Partnership and was influential in securing the development of the Childhood Anomalies and Rare Disease Registration and Information Service in Scotland, supporting relevant service planning with robust data.   

Chair Elizabeth Porterfield, MBE said: “I am absolutely incredulous to receive this award.  Although the MBE is in my name, it is recognition of all the people I have worked with over the years and for the vital work to improve lives that is delivered by the trustees and staff at the charities I work with: Genetic Alliance UK, Sight Scotland and Sight Scotland Veterans. I would like to thank them all for the incredible teamwork that has led us here.”

Chief Executive Louise Fish said: “We are delighted that Liz’s hard work and achievements have been recognised in the 2024 King’s Birthday Honours. We’re lucky to benefit from her drive and expertise in leading the Board of Trustees, and glad today’s announcement gives us a chance to thank Liz publicly for the time, energy and expertise that she gives to our charity and the other fantastic organisations that she supports.”