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 years working with the charity.
Initially a voluntary role, Liz’s engagement with the BPA has evolved over more than 20 years.
Whilst involved in most aspects of the BPA’s workstreams, Liz tends to be the main point of contact for policy, regulatory and finance issues and for developing strategies and project proposals – while also being highly involved in patient advocacy, support and education.
Liz directly support patients and families on a day-to-day basis, including collaborating with medical and other professionals, and working together with charitable organisations that have similar interests and goals. Liz is heavily involved with new drug approval processes, coordinating submissions to NICE, the EMA and other government bodies, as well as working with government areas such as NHS England to ensure that porphyria patients are represented to the best potential.
In October 2018, Liz was elected as the patient representative on the Executive Board of Ipnet (International Porphyria Network – a clinician-led non-profit association that aims to improve healthcare services for porphyria patients). She is also a key member of a working group which aims to create consensus clinical guidelines for the acute porphyrias.