Liz has been involved with the charity for a number of years. She became a trustee in 2005 then took up her current role in 2010. Although working mainly as a volunteer, more recently Liz also started working six hours a week as a paid administrator, in addition to her voluntary hours.

As well as being severely affected by acute porphyria since her late teens, Liz has developed an in depth understanding of all types of porphyria and the needs of those living with them through her contribution to the email and telephone helplines and participation in a variety of workshops and conferences.

She is involved in a wide range of the charity’s work, including helping to support affected patients and their families, organising newsletter and leaflet production, collaborating with medical and other professionals, and working together with charitable organisations that have similar interests and goals, as well as government bodies such as NHS England and NICE to ensure that porphyria patients are represented to the best potential.