MP for Stoke-on-Trent Central, 2017-19. Beat then UKIP leader Paul Nuttall in Feb 2017 by-election. Formerly an employee of the trade union UNISON and has publicly endorsed increasing workers’ rights and protections.

Stoke-on-Trent Central is geographically in the middle of Stoke-on-Trent. Of the six towns that comprise Stoke-on-Trent (Arnold Bennett missed one) it now has four, Fenton and a proportion of Longton from the South seat being added to Stoke and Hanley in 2024. It remains the most economically challenging Stoke-on-Trent seat, with the highest proportion of ethnic minority residents, routine and semi-routine workers, and social rented tenants.

Kamran Mallick is the CEO of Disability Rights UK, where he leads efforts to advocate for the rights and inclusion of disabled people across the UK.

With over 20 years of experience in the disability sector, Kamran previously served as Chief Executive of Action on Disability, where he was instrumental in transforming services for young people with disabilities and establishing supported internships.

As CEO of DRUK, Kamran works to influence policy and ensure that disabled people’s voices are heard in decision-making processes. His leadership is driven by his personal experience as a wheelchair user, and he is committed to creating a more inclusive society for disabled individuals.

Kirsty Hoyle is an experienced charity leader and change-maker who joined Metabolic Support UK after serving as CEO of Transport for All, a charity dedicated to fighting for the rights of disabled people to travel with freedom and independence.

With a background working across the public and private sectors, Kirsty has driven positive, lasting change, promoting the connection between better services, well-being, and community integration. She has also held roles at Sense, Diabetes UK, and Help for Heroes.

Nicola Miller is the co-founder and Trustee at Action for XP, a registered charity dedicated to supporting individuals and families affected by xeroderma pigmentosum (XP), an ultra-rare condition. She leads the charity’s support and information services, ensuring that everyone in the XP community has access to up-to-date resources and a compassionate network to help navigate the challenges of living with XP.

As a mum to a son with XP, Nicola brings personal experience and deep understanding to her work, driven by a passion for empowering individuals to live their best lives, regardless of life stage or health prognosis.

Michelle Conway is a freelance consultant for Metabolic Support UK and the founder and CEO of CRD Consulting Ltd.

Originally trained as a nurse, Michelle went on to build a successful two-decade career in the pharmaceutical industry, focusing on strategies to improve market access for ultra-orphan medicines. In 2019, she further expanded her expertise by completing a master’s degree in public policy.

Michelle now works to remove barriers to effective care and treatment for people living with rare and complex conditions. She is committed to using her knowledge and experience to help Metabolic Support UK achieve its goals for the IMD community.

Lindsay Birrell has over 12 years of experience in the rare disease and patient advocacy space, specialising in charity development, health policy, and strategic planning. As Co-CEO of Realise Advocacy, she develops stakeholder engagement strategies, fostering collaborations between pharmaceutical companies, patients, and advocacy groups to create patient-centric solutions in a fragmented ecosystem.

Previously, Lindsay was CEO of Cheshire Young Carers, supporting young carers and their families, and served for six years as CEO of Metabolic Support UK, transforming it into a leading resource for individuals with metabolic disorders.

Zoe works as the Clinical Nurse Specialist for the All Wales Syndrome Without A Name (SWAN) Clinic. She has a passion for delivering and improving holistic and coordinated care for patients and their families living with rare and undiagnosed diseases, as well as increasing awareness and educational opportunities for healthcare professionals.

She has a Master’s in Advanced Practice from Cardiff University with focuses on research, patient safety, health policy and economics, and teaching and assessing. Zoe is the UK leader for the Global Nursing Network for Rare Diseases and a clinical ambassador for Medics 4 Rare Diseases.

Raquel Castro leads EURORDIS’ advocacy and projects on holistic care and equality, focusing on integrated health and social care, social policy, and rights related to disability, employment, and non-discrimination. She has nearly two decades of experience working within the non-profit sector, including 16 years within national and European organisations representing people with rare diseases.

Raquel holds a Bachelor of Arts in Communication and Media, a post-graduate degree in Project Management, and a certificate degree in Public Policy Analysis.

Laura Smith van Carroll is the Head of Insight & Advocacy at Metabolic Support UK, bringing a strong background in Health Economics and Outcomes Research to her role. Before joining MSUK, she worked for a leading research consultancy, where she led diverse projects aimed at improving patients’ access to medicines. Her expertise lies in gathering and analysing data to support meaningful changes in healthcare.

At MSUK, Laura leads research initiatives to capture the lived experiences of patients and families affected by inherited metabolic disorders (IMDs) ensuring their voices are represented in areas such as clinical trials and health technology appraisals.

Dr Tom Kenny works across the UK and Ireland as Patient Advocacy Lead for Rare Disease at Chiesi, a pharmaceutical company.

Beginning his career in General Practice, he transitioned to NHS management and later to Public Health Medicine. With extensive experience at every level of NHS commissioning, his roles have included Director of Commissioning for a Primary Care Trust, Medical Adviser for Specialised Commissioning, and National Highly Specialised Commissioning. He also contributed to the development of the NICE process for evaluating drugs for ultra-orphan diseases through work with NSCAG, NCG, and AGNSS.

Diana is the Founder and CEO of the Ectodermal Dysplasia (ED) Society, dedicating her full-time voluntary efforts since 1996.

Married to Ian with five children, two of whom are affected by ED, Diana brings invaluable personal and professional experience to her role. Her responsibilities include attending and presenting at medical conferences, co-chairing international ED leaders’ meetings, and advocating for families at school meetings and benefit tribunals. She collaborates with researchers, proofreads medical leaflets for the British Association of Dermatology, and writes articles for medical journals, newsletters, and the ED Society website.

Diana also liaises with families, medical professionals, and supports the Society’s Trustees and Medical Advisory Board. Through her tireless work, she has become a pivotal figure in the global ED community, helping individuals and families navigate the challenges of this condition while advancing awareness, education, and research.

Carl Lander is a Registered Nurse who lives with a rare red cell disorder, one of the Inherited Metabolic Disorders. He has spent a career in the NHS across a range of disciplines and roles and has experienced a wealth of his own and others’ lived experiences.

Carl is Co-Chair at MSUK and the International Collaboration Director of the Pyruvate Kinase Deficiency (PKD) International Alliance. He spends much of his time advocating for better care for those with an IMD and as a long standing Peak Registry steering committee member (a global registry of data for those with PKD) has co-authored a number of papers discussing the impacts of this disorder

Jake lives with hypophosphatasia and was diagnosed five years ago. He has a positive attitude towards life and told us “I like to be cheeky and have a laugh – after all life is short and you’ve got to make the best of a bad situation.” 

He is actively involved with Metabolic Support UK and uses his lived experience to drive change and inspire others, collaborating with the charity on a number of key projects including Thoughts into Action, medicines consultations and at conferences. Through this work, Jake said he’s been able to achieve things he never thought were possible since the diagnosis. 

Celia Chartres-Aris is a multi-award winning Disabled Government special advisor, campaigner and lobbyist, researcher, policy and legal expert, founder and investor.

Celia has received multiple awards recognising her work including being named The Most Influential Disabled person in the UK 2024, on The Global Diversity Leaders list, a Global Future Young Leaders Scholar UK Delegate, and named as the most influential Disabled person changing law and policy.

Rosie Lindup is a Senior Policy and Public Affairs Manager at the BioIndustry Association, the trade association for the UK life sciences sector. She leads the BIA’s policy work on access to medicines, rare diseases, cell and gene therapies, and antimicrobial resistance. With a background in politics and public affairs, Rosie is experienced in developing and delivering plans to influence policy.

As a Trustee at MSUK, she supports the team’s vital work in advocating for solutions to the challenges faced by the IMD community.

Louise Fish has over 25 years of executive and non-executive board experience across health and social care in the charitable, public and commercial sectors. Louise was previously Chief Executive of Genetic Alliance UK, an alliance of over 200 charities and support groups representing people with genetic and rare conditions. Prior to this she was Chief Executive of the Tuberous Sclerosis Association, one of Genetic Alliance UK’s members.

Louise currently has several non-executive roles. These include chairing NHS England’s Rare Disease Advisory Group and sitting on NHS England’s Patient and Public Voice Assurance Group.

Dr Reena Sharma is a Consultant in Adult Inherited Metabolic Diseases at The Mark Holland Metabolic Unit, Salford Royal Hospital, Greater Manchester.

After completing her training in the region, Reena took up her current consultant role, where she cares for adults with a range of metabolic diseases and supports their families.

Reena is actively involved in research focused on developing new therapies for some of these complex and challenging rare conditions. As a Trustee at MSUK, she is committed to using her knowledge and expertise to help the charity achieve its goals.

Rick Thompson joined Beacon (previously known as Findacure) as the charity’s third member of staff and first-ever Scientific Officer. His aim was to drive forward the charity’s work in drug repurposing.

Rick became CEO in 2017 and has since been involved in almost all of Beacon’s projects. He drives the organisation’s growth and strategy, and co-leads on work packages in REMEDi4ALL alongside EURORDIS, and is part of the coordinating hub for LifeArc’s Translational Centres for Rare Disease. He has written articles, given talks and provided training across Europe focusing on topics such as patient engagement in research, the repurposing of generic medicines, and rare disease policy.

Nick Meade is the Director of Policy at Genetic Alliance UK, where he leads efforts to improve outcomes for individuals affected by genetic, rare, and undiagnosed conditions through evidence-based advocacy and campaigning.

With over 15 years of experience at Genetic Alliance UK, Nick manages a policy and public affairs team operating across England, Wales, and Scotland. His team focuses on ensuring that the voices of those living with genetic and rare conditions are heard by policymakers on issues such as diagnosis, care coordination, research regulation, and access to innovative medicines.