Calling all Fellows and Members!
The Faculty of Pharmaceutical Medicine (FPM) is seeking a Chair to lead its Rare Diseases Expert Group. The group aims to provide a platform to foster open dialogue, education and collaboration with relevant stakeholders across the rare diseases community.
The group focuses on supporting the advancement of drug discovery across rare diseases. It also works to engage healthcare professionals and patients to improve understanding of rare conditions and to encourage participation in research.
As Chair, you will drive the group’s strategic direction and work through report writing, stakeholder engagement, consultation responses, and more, driving meaningful impact in rare diseases.
Remit and Recent Activities
The Rare Diseases Expert Group plays a key role in shaping discussions and policies around rare disease research and treatments. Its remit covers drug discovery across rare diseases, including orphan drugs, advanced therapies and gene therapies.
Recently, the group has been involved in key initiatives including:
- NICE consultation on the proposed refinement to the routing criteria for Highly Specialised Technologies (HST)
- NHS Change Consultation – The 10-Year Health Plan for England
- NICE consultation on the transition from children to adult services
- Rare Disease and AI blog: Can AI help produce accurate and timely diagnosis?
Operational
The Rare Diseases Expert Group operates remotely, offering flexible participation for its members. The Chair serves a three-year term, beginning from the date of their first meeting.
While the group’s workload varies, the Chair should expect to dedicate approximately three hours per week on average. This includes leading discussions, overseeing projects, and engaging with group members.
Any conflicts of interest or related concerns will be managed as they arise, ensuring the group’s work remains transparent, ethical, and impactful.
Experience (desired but not essential)
While specific expertise is not mandatory, the following experience and skills would be beneficial for prospective members of the Rare Diseases Expert Group:
- Clinical or Research Experience in Rare Diseases – Background in pharmaceutical medicine, clinical practice, translational research, or drug development related to rare diseases.
- Regulatory and Policy Knowledge – Understanding of regulatory frameworks, market access, and healthcare policies impacting rare diseases.
- Engagement with Industry or Academia – Experience collaborating with pharmaceutical companies, biotech firms, academic institutions, or healthcare organisations.
- Patient Advocacy and Public Health Awareness – Interest in patient-centred care, clinical trial participation, and ethical considerations in rare diseases treatment.
- Stakeholder Collaboration – Experience working with regulatory bodies, NHS, international health organisations, or professional associations.
- Strong Communication Skills – Experience in report writing, stakeholder engagement, or public speaking.
- Leadership or Project Management Experience – Particularly in multidisciplinary teams.
If you are passionate about rare diseases, policy development, and patient-centred care, and want to contribute to the advancement of pharmaceutical medicine, we invite you to join FPM’s Rare Diseases Expert Group!
How to Join
If you would like to join this group, and are a Member (MFPM) or Fellow (FFPM) of FPM, please email fpm@fpm.org.uk with your CV and a short cover letter (max 300 words) outlining your experience and interest in the role.
FPM welcomes and actively seeks to recruit people to its activities regardless of age, disability, gender reassignment, marriage and civil partnership, pregnancy and maternity, race, religion or belief, sex or sexual orientation. FPM aspires to reflect the diversity of its members in all its committees, senior roles and staff in general.
Closing date for applications: 17:00 (UK time) on Wednesday 21 May 2025
Shortlisted applicants will be contacted to schedule an interview. The interview panel will consist of: FPM Policy and Communications Group Chair (or delegated deputy), Member of FPM Staff (usually Head of Marketing and Communications), and FPM Board trustee.
Please note that we reserve the right to close this vacancy early if we receive sufficient applications for the role.