Programme

Hannah Humphrey is a passionate advocate for people living with rare conditions and mum to a 13-year-old with 22q11 Deletion Syndrome and TANGO2, a charity where she volunteers. Her family’s experiences have inspired her to work for more understanding, connection, and compassion across the rare disease community. Hannah is a member of the Participant Panel and Ethics Committee at Genomics England, a Lived Experience Expert with Great Ormond Street Hospital Children’s Charity and also part of the Beacons Patient Group Engagement Committee. Hannah believes that the voices of patients and families should guide every stage of research, education, and care.

Charlotte is a registered nursing degree apprentice currently studying at the University of Sunderland and working at Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust. She is aiming to qualify in January 2028 as a registered mental health nurse and has worked in the NHS for over 10 years.

Charlotte was diagnosed with Osteogenesis Imperfecta Type 1 (also known as Brittle Bone Disease), at the age of 2, having had so many fractures over the years that she’s now lost count (50+). Despite this, she’s very determined and loves being as active as possible: having run 15 half and 4 full marathons. Thankfully, Charlotte hasn’t had a fracture since October 2021 – the longest period of her life fracture-free – but she’s keen to continue sharing her story, and hopefully inspire others.

Silvia is Chair of Achalasia Action, the UK’s only charity dedicated to supporting people with achalasia, a rare oesophageal condition. She developed achalasia at 17, when she realised that food kept on getting stuck in her chest when she tried to swallow. Initially misdiagnosed with an eating disorder, she eventually received a successful surgical intervention to relieve her symptoms. When her symptoms returned in her early 20s, she found herself in a foreign healthcare system with no support, having migrated to the UK for her studies and work.

Silvia found a supportive community at the monthly London Achalasia Meetup, hosted by Amanda (now a Trustee) and Alan, Achalasia Action’s founding Chair. Keen to give back, she co-founded Achalasia Action with them and other patients, and became Chair in November 2023. Professionally, Silvia is a Senior Policy Lead at NHS England, working across areas including mental health, maternal health, and healthcare system organisation and transformation.

Stuart leads on Business Development at Aprecia Pharmaceuticals, the leader in pharmaceutical additive manufacturing. In this role, he is active in working with a range of pharmaceutical companies to create unique dosage forms to better meet patient needs. Prior to this, Stuart spent 25 years at Lilly in a range of National and Global leadership roles, responsible for commercial and market access strategy and capabilities across a range of therapeutic areas.

Michael is a doctor and digital health entrepreneur on a mission to empower every patient through AI. With experience leading the implementation of virtual reality and AI technologies across the NHS, he founded Advoca, the world’s first AI appointment assistant designed to support people living with rare, serious, and chronic diseases.

Kerry Leeson-Beevers is the Chief Executive of Alström Syndrome UK (ASUK). ASUK aims to provide personalised support, raise awareness, conduct pioneering research, and enable better treatments and monitoring through the AS multi-disciplinary clinics.

Alström Syndrome UK also manages the Breaking Down Barriers Project. This project brings together a network of over 70 organisations to develop supportive and inclusive services for people from diverse and marginalised communities.

Kerry has lived experience as her son is diagnosed with AS. She is a patient representative on the England Rare Diseases Framework Delivery Group and is co-applicant on various NIHR funded research studies.

Amit Aggarwal has over 14 years experience in the pharmaceutical industry, most recently at LEO Pharma as Medical Director for the UK and Ireland. Prior to that he spent over a decade at Bayer where he held various roles including pharmacovigilance, Global medical affairs, and latterly as Director of Medical Affairs UK for General Medicine.

His background is as a medic, spending 5 years working clinically in the NHS, mainly in secondary care. Amit has worked on both innovative and established product launches, spanning a range of therapy areas including oncology, women’s health, cardiovascular medicine, dermatology and thrombosis in the UK and globally.

Amit holds a MA in Neuroscience from the University of Cambridge, and a MBBS from Guy’s, King’s & St Thomas’ School of Medicine.

James Falcous is a Patient & Site Engagement Lead at Boehringer Ingelheim, where he works across multiple therapy areas to enhance clinical trial processes to ensure they are both patient- and site-centric. With a strong focus on collaboration and innovation, James is dedicated to improving the experience and outcomes for all parties involved in clinical research.

Previously, James has worked on behalf of Patient Engagement communications agencies to support pharmaceutical companies to employ best-practice techniques across all clinical trial materials.

In both professional and personal worlds, James is a committed advocate for LGBTQIA+ rights in healthcare. In his spare time, he volunteers with the LGBT Foundation in Manchester, supporting initiatives that promote inclusive and equitable access to care for all communities.

Kath Bainbridge leads the Rare Diseases and Emerging Therapies policy team, which has recently moved into the Office of Life Sciences. The team has responsibility for: policy on rare diseases; emerging technologies associated with human genetics; stem cell transplants; and genetic testing and insurance. This includes delivering against the priorities of the UK Rare Diseases Framework through developing and reporting on England’s Action Plans. The team works closely with the National Institute for Health and Care Research and with a broad range of public sector delivery partners and wider stakeholders, placing robust evidence and the patient voice at the heart of their work.

Kath has a PhD in genetics from the University of York and worked in Switzerland as a research scientist before joining the civil service. Over the past 17 years, she has worked in research funding, policy, strategy and regulatory roles across several government departments and in scrutiny roles for Parliament and the Independent Commission for Aid Impact.