Who We Are

Rare Disease Patient Advocacy Group: “[It is] fair to say we lack the time of someone who has the expertise, within our organisation. We can develop the expertise, but we also need to offload some of the other things to other people so the charity keeps running.”

Lindsay Birrell

Co-CEO

Lindsay is the former CEO of Metabolic Support UK where she served for 6 years and is a trustee at Medics 4 Rare Diseases.

Lindsay is currently a Patient and Public Voice representative on NHS England's Rare Disease Advisory Group and also served as NHS England Metabolic Clinical Reference Group Patient and Public Voice member for over 4 years.

During her time working in rare diseases she has developed knowledge of the challenges that all stakeholders face in participating in NICE and NHS England access processes for new treatments.

Lindsay has become a strong advocate for supporting patient groups in drug development and access and has seen first-hand that well supported patient advocates can have an impact in decision making.

Lindsay Birrell on LinkedIn:

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Josie Godfrey

Co-CEO

Director of JG Zebra Consulting

Josie was a trustee of Metabolic Support UK, supporting their work on access to treatments for rare metabolic disorders.

Amongst her current projects, Josie is Strategic Director for Duchenne UK’s Project HERCULES. Josie has over 10 years experience working in the commissioning and evaluation of new treatments for rare diseases and set up and ran the NICE Highly Specialised Technologies programme.

Josie was the Patient and Public Engagement lead for national commissioning and developed documents for organisations explaining their role in HTA processes.  She has since supported a number of patient organisations to engage effectively in NICE processes and maximise their impact on access decisions.

Josie Godfrey on LinkedIn: