Former government head of Strategic Planning and Clinical Priorities joins our Board of Trustees

Elizabeth (Liz) Porterfield MBE has joined the Board of Trustees at Scottish Huntington’s Association.

The role is especially meaningful for Liz, whose elder son died of complications associated with Huntington’s disease.

Speaking about her decision to join the charity’s board, Liz said: “Huntington’s disease is the absolute worst of all of the absolutely horrible neurological conditions. It doesn’t present until adulthood in the main but does also occur in very few children. The disease robs people of their cognitive and physical functions, including speech; it is rare, can take a long time to diagnose, and there is no cure.

“The services provided by Scottish Huntington’s Association are absolutely essential for people with Huntington’s and their families/carers. There are so few such services, more are needed, not fewer. These services are the only recourse for families affected by this genetic disease.” 

Scottish Huntington’s Association is the only organisation in the country dedicated exclusively to providing specialist services and the personalised support that is needed by individuals and families impacted by the neurological condition.

Between 2016 and 2020, Liz and her colleagues on the Scottish Government Clinical Priorities Team worked with Scottish Huntington’s Association to develop the world’s first National Care Framework for Huntington’s Disease.

As Chair of Genetic Alliance UK since 2019 and Vice Chair of Sight Scotland/Sight Scotland Veterans since 2021, in addition to having held a number of key roles in the Scottish Government before her retirement, Liz’s appointment to Scottish Huntington’s Association brings additional extensive knowledge and experience to the organisation.

Genetic Alliance UK, which is a membership organisation of over 220 charities, works in the areas of genetic diseases/conditions, rare diseases/conditions and undiagnosed conditions. It provides secretariat support for UK and devolved Parliaments for their Cross Party and All Party Groups and is an influential member of all three governments’ policy delivery groups in the rare disease field, and particularly with reference to achieving a credible successor to the Rare Disease Framework, the extension to which ends in early 2027 and to which all three Governments have committed.

Sight Scotland (previously known as Royal Blind Scotland) was established 230 years ago and provides services in the community for people with visual impairment, it also runs the only dedicated school for children with sight loss/impairment as well as the Scottish Braille Press. Sight Scotland Veterans (previously known as Scottish War Blinded), was founded in 1915, works to provide targeted services for veterans of all of the armed forces and supports, campaigns and enables research for people affected by visual impairment.

From 2008 to 2017, Liz was on permanent secondment from NHS National Services Scotland to the Scottish Government in key roles including Head of Strategic Planning and Clinical Priorities (2012 – 2017). Prior to this, she led the National Planning Team (2008-2012), and the Cancer Team (1999-2008). In 2016 Liz and her team produced the first national plan for rare diseases in the UK.

In 2024, for her contribution during her career and her continuing contribution to the community following retirement, Liz was recognised with an MBE for services to people with rare diseases.

Chair of Scottish Huntington’s Association Board of Trustees Aarran Air said: “We are delighted to welcome Liz to the Scottish Huntington’s Association Board of Trustees. Liz’s professional experience, network and personal perspective of Huntington’s disease will contribute greatly to our work as we continue to fight tirelessly to ensure that everyone impacted by Huntington’s disease in Scotland has access to the specialist care and support they need, regardless of where they live.”

*For details about opportunities to join our Board of Trustees, please email sha-admin@hdscotland.org*