Liz Gill is CEO of the British Porphyria Association. Having lived with severe acute porphyria since her late teens, Liz brings both professional expertise and lived experience to her role, alongside more than 20 years of involvement with the BPA. Over the years, she has experienced the profound impact that porphyria can have on individuals and families, including prolonged hospitalisations, recurrent life-threatening attacks, paralysis, and ongoing complications including kidney disease and residual nerve and muscle damage. Her experiences have given her a deep understanding of the realities of living with rare disease and continue to shape her commitment to improving support, care and outcomes for patients.
Originally joining the organisation in a voluntary capacity, Liz has played a central role in the BPA’s growth and development over two decades, progressing through Trustee and Vice Chair positions before taking on more extensive roles. She now leads the organisation’s strategic and operational direction, with a focus on patient advocacy, organisational sustainability, education and support services.
Liz is closely involved in medicines appraisal and access processes, coordinating patient submissions to bodies including NICE, MHRA the EMA and other government and regulatory organisations, while also engaging with NHS England and healthcare professionals to ensure the needs of porphyria patients are effectively represented.
Alongside her leadership responsibilities, Liz remains actively involved in supporting patients and families on a day-to-day basis and works collaboratively with clinicians, researchers, charities and industry partners to improve care and outcomes for people living with porphyria.
Internationally, Liz contributes to a number of collaborative rare disease initiatives. She has served as the patient representative on the Executive Board of the International Porphyria Network (IPNET) and currently serves on the Advisory Board of the Global Porphyria Advocacy Coalition (GPAC). She has also contributed to international working groups focused on developing consensus clinical guidelines for the acute porphyrias.