2nd Patient Empowerment World Congress 2026 Europe
““Part of Patient Centricity & Collaboration Series”
“Connecting Patients, Clinicians, Industry and Policymakers to Transform Healthcare Through Partnership, Innovation and Empowerment.”
Hilton London Kensington, London, United Kingdom
Wednesday 14th - Thursday 15th October 2026
FEATURING - KEY INDUSTRY EXPERT SPEAKERS 2026
- Victoria Hayes, Director Public Affairs, Kyowa Kirin
- Lara Bloom, President and CEO, The Ehlers-Danlos Society*
- Stephen O’Farrell, Executive Director, Patient Engagement, Spectrum Science
- Liz Gill, CEO, The British Porphyria Association
- Dave Chuter, Chair, ICPV
- Anjana Pindoria, Founder, I am Patient
- Salaija Maganti, Founder, Prurigo Nodularis International Charity
- Rasmus Hjorth, Patient Engagement Director, James Lind Care
- Karen Rockell, Patient Co‐Director/PPIE Lead, UK Organ Donation & Transplantation Research Network
- Louise Fish, Interim Chair, UK Rare Diseases Forum, Department of Health and Social Care
- Lisbeth Snede, President, PiCC United
- Dan Farrow, Head of Community Engagement, Breakthrough T1D
- Hannah Humphrey, Mum of a Child with 22q11 Deletion & TANGO2, Lived Experience Expert
- Joana Pina, Patient Advocate, President, CBP Portugal
- Steve Clark, Founder and Patient Advocate, Strive for Five
- Marta Lago, Programme Co-lead, Healthcare Systems Transformation, The Care Lab
- Cornelia Reyes Acosta, Research Associate in Digital Health, King's College London
- Carl Lander, Research Director, Pyruvate Kinase Deficiency International Alliance
- Neil Betteridge, Senior Director, Europe, Global Alliance For Patient Access
- Robert Mitchell-Thain, Chief Executive Officer, PBC Foundation
- And much much more...
VICTORIA HAYES
Director Public Affairs, Northern Cluster
Vicky has 19 years of experience in government affairs and advocacy, with specific expertise in the pharmaceutical sector across Europe. She has led major campaigns on access to innovative treatments, service redesign and the crucial importance of the patient and public voice in the health debate. As a former Governor of the UK's largest mental health trust and today as a mental health advocate she focuses on health equity across the board. She is passionate about innovation strategies, women’s health and systems thinking.
Dave Chuter
Chair
Dave Chuter is a patient advocate focused on strengthening the role of lived experience in research and healthcare. He works to support, train and mentor patient advocates and early career researchers, helping them to collaborate effectively and meaningfully shape research, services and policy.
He is the Chair of Independent Cancer Patients' Voice (ICPV), Digestive Cancers Europe (DiCE) and the EORTC Patient Panel, where he helps guide patient involvement strategies and supports the development of inclusive, impactful engagement across research programmes. Dave brings lived experience as an oesophageal–gastric cancer patient, having been diagnosed and treated in 2006, which underpins his commitment to improving outcomes and patient involvement in research.
Drawing on his involvement with the ICPV VOICE course, Dave has contributed to developing supportive learning environments that build confidence, skills and peer networks across the patient and research community. He is particularly interested in creating practical, scalable approaches to advocacy that reduce barriers to participation and improve equity of access.
Dave will share insights on building sustainable pathways for training and mentoring, and on fostering partnerships that enable both patient advocates and early career researchers to have real impact.
LARA BLOOM*
President and CEO
Lara Bloom is the President and CEO of The Ehlers-Danlos Society and responsible for globally raising awareness of rare, chronic, and invisible diseases, specializing in the Ehlers-Danlos syndromes (EDS), hypermobility spectrum disorders (HSD), and related conditions. Lara leads coordinated medical collaboration, raising funds for research and focuses on global progression, education and awareness. Her passion is pushing boundaries and fighting for progression in Patient Engagement and Global Collaboration, and she was officially appointed an Academic Affiliate Professor of Practice in Patient Engagement and Global Collaboration at Penn State College of Medicine, USA, in March 2020, which commemorated ten years in the field of patient engagement and advocacy leadership. She is a published author in various renowned journals and speaks worldwide at conferences, policy meetings, corporate and fundraising events and academic lectures as an expert keynote speaker.
Anjana Pindoria
Kidney Tx Patient, Founder
Anjana was born with no bladder and chronic renal failure. For 13 years, she wore a stoma bag. In November 1995, her mother, against societal stigma donated her kidney. In February 1996, came a bladder reconstruction, and the humbling, gruelling journey of relearning the most basic of human functions, while navigating her teenage years. Doctors had already wrote her off and said she would not see her 30th birthday.
She has just celebrated her 30th kidneyversary.
With over 20 years spanning pharmaceutical development, global health regulation, and patient care, Anjana serves as Director of Product Strategy at EXTEDO helping global health authorities digitalise scientific assessment of medicines. But her most defining role is as founder of I am Patient. A movement built on one radical belief: that patients belong at the centre of every decision, every policy, every cure and the healthcare system has to change from passive treatment to active partnership.
She does not know how much time she has. So she is building her own digital twin, to accelerate research, to create hope, to leave something behind that saves lives long after she is gone.
Because for her, urgency is not a strategy. It is personal.
Stephen O’Farrell
Executive Director, Patient Engagement
Stephen O’Farrell is an accomplished patient engagement consultant with expertise in patient advocacy strategy and patient-focused communications. Since joining Spectrum Science (formerly Aurora) in 2015, Stephen has developed the agency’s PARTNER values and led the European team to achieve Patient Information Forum (PIF Tick) accreditation for accessible, trustworthy health information.
Stephen’s experience spans a broad range of therapeutic areas—including respiratory, cardiovascular, immunology, oncology, neurology, and rare diseases—at national, European, and global levels. With a background in journalism and early career experience at Arthritis Ireland, Stephen is committed to driving meaningful change for patients through collaboration, evidence generation, and impactful storytelling.
Steve Clark
Founder and Patient Advocate
Steve Clark was diagnosed with stage 4 colorectal cancer in 2013 and has since become an active patient advocate. He is a regular speaker for audiences of patients, healthcare professionals, researchers, and industry representatives as well as volunteering with several charities including being a Campaigns Ambassador for Cancer Research UK. Steve is a patient representative to several studies and study groups and has been co-author on a number of papers.
In 2017 he set up www.StriveForFive.org, a not-for-profit organization with the mission to give hope to fellow patients with stage 4 cancer and to advocate for improved care for those with advanced cancer.
He is a business and marketing consultant for the pharmaceutical industry with Redwood Brand Curators and has worked in UK and global pharma for over 35 years in business management and global marketing.
Steve is a former Chairman of the Pharmaceutical Marketing Society and was awarded Healthcare Communications Advocate by Communiqué.
Joana Pina
Patient Advocate, President
Joana is a healthcare professional with a background in Biochemistry and currently works in Clinical Pathology, alongside coordinating activities in clinical research.
She is also the co-founder and president of a patient association dedicated to primary biliary cholangitis (PBC), and lives with the condition herself. This dual perspective - as both a healthcare professional and a patient - shapes her approach to patient empowerment and engagement.
She is particularly interested in ensuring that patient perspectives are meaningfully integrated into healthcare discussions and initiatives, contributing to more transparent, inclusive, and effective healthcare systems
Liz Gill
CEO
Liz Gill is CEO of the British Porphyria Association (BPA), the UK’s national charity supporting people affected by porphyria across the UK and Ireland. With over 20 years’ experience in the non-profit sector, she is a committed patient advocate focused on improving care, advancing research and amplifying patient voices. Liz actively contributes to the International Porphyria Network (IPNET), following six years of Board service, and also serves on the Advisory Board of the Global Porphyria Advocacy Coalition (GPAC), driving impact for the porphyria community globally.
Marta Lago
Programme Co-lead
Marta is a service designer and innovation leader with over a decade of international experience in health and care. Through roles spanning biotech, digital health, and service innovation, she has led the design and implementation of healthcare strategies, solutions, and services that improve health outcomes, enhance care experiences, and help transform healthcare ecosystems.
At The Care Lab, a platform of care activists using care-centered design to rethink models of care, Marta focuses on System Transformation Programs and currently co-leads a mission-driven initiative to transform cancer support in the Basque Country, Spain. Marta is passionate about building bridges across disciplines, organizations, and approaches, and enabling people’s participation to make care systems more humane and equitable.
Marta holds a Master of Engineering from University of the Basque Country and a Master of Arts from the Royal College of Art in London. She teaches Care Centered Design and Care System Transformation at the Lucerne University of Applied Sciences and Arts in Switzerland.
linkedin.com/in/martalago
Karen Rockell
Patient Co‑Director/PPIE Lead
Karen is an experienced and passionate patient advocate with lived experience of several rare diseases and received a liver transplant in 2010. She is director of the UK Organ Donation and Transplantation Research Network C.I.C, (UKODTRN) which is a community-focused organisation dedicated to making organ donation and transplantation research accessible and understandable to those the research serves. Her work focusses on using plain language summaries as a strategic tool for patient engagement and the improvement of patient public involvement in research. Outputs include delivering plain language summaries in different formats to suite the people who will benefit from hearing about it.
Karen is an experienced PPIE facilitator, patient co-applicant and published patient author. Her research interests include improving patient public involvement at all stages of research from co-production through to meaningful dissemination, tackling health inequalities and digital exclusion, and improving research impact for patient benefit.
Following a SCAD heart attack, she co-founded a UK charity called Beat SCAD to help support other people affected by this rare condition, and also to raise money to fund research.
Cornelia Reyes Acosta
Research Associate in Digital Health
Dr Cornelia Reyes Acosta is a researcher at King’s College London, where she works on the evaluation of clinical trials, primarily in respiratory disease, including the implementation of new and often digital interventions designed to support and empower patients. Her work sits at the intersection of hospital care, primary care, patient experience, and applied research, with a focus on how innovations are adopted and experienced in real-world settings.
As a cancer survivor and patient advocate, Cornelia brings lived experience into her collaborations with clinical teams, trial networks, and patient communities across the UK and Europe. Her research focuses on
ROBERT MITCHELL-THAIN
CEO
Drawn into the world of PBC with his mother's diagnosis in 1994, Robert has, in one way or another, been involved in PBC advocacy since even before the PBC Foundation was founded in 1996. An experienced and powerful patient advocate, Robert's specialist subject is listening to the patient, and using the patient experience to improve the patient experience. An international leader, presenter, innovator, academic, committee member and author on a number of topics, his driver is to ensure the patient voice, and experience, is front and centre of every potential solution to the challenges they face. An agent for change, he has led various campaigns and innovations to improve the PBC patients' quality of life on a multinational stage.
Lisbeth Snede
President
Lisbeth Snede is President of PiCC United (Patient Involvement &Collaboration Community), a patient-driven initiative working to strengthen meaningful patient involvement across healthcare, research, and policy.
With over 20 years of experience across healthcare systems, patient organisations, and industry, Lisbeth specialises in translating patient insights into practical, scalable solutions. She works closely with international
organisations, researchers, industry partners, and patient communities to promote more inclusive, ethical, and representative approaches to healthcare innovation.
Her work focuses on ensuring that patient perspectives are not only heard but effectively implemented in clinical research, healthcare design, real-world evidence generation, and decision-making processes. Lisbeth is recognised for building strong cross-sector collaborations and bridging the gap between strategy and real-world implementation.
She is actively involved in multiple European and international initiatives supporting patient partnership, co-creation, and access to clinical trials. Through PiCC United, she works to lower the barriers for involvement
Dan Farrow
Head of Community Engagement
Dan Farrow is a senior leader in community engagement and health equity at Breakthrough T1D UK, part of a global charity committed to accelerating breakthroughs that improve lives today while driving progress towards cures for type 1 diabetes. Dan leads national work to support people affected by type 1 diabetes (T1D) to live well and thrive. His approach is rooted in lived experience, co‑production and a strong commitment to equity, diversity and inclusion - working to broaden the voices represented in healthcare and tackle barriers faced by underserved communities.
He works closely with NHS partners across the UK to improve access to diabetes technologies, influence service improvement and reduce health inequalities, contributing to clinical networks, advisory boards and steering groups across the four‑nation NHS. Dan is a Board member of DAFNE, the UK’s national structured education programme for adults with type 1 diabetes, and serves on European‑level patient advisory boards focused on building more person‑centred healthcare systems.
Dan leads a multi‑disciplinary team spanning community engagement, information and support, events and partnerships. Alongside his leadership roles, he has published a series of sector pieces on equity, access to technology, peer support and community‑led approaches to care - drawing on front‑line insight to show how lived experience can drive more human, effective healthcare systems.
Hannah Humphrey
Mum of a Child with 22q11 Deletion & TANGO2
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. Her family’s journey through complex diagnoses, hospital stays, and everyday challenges drives her commitment to putting lived experience at the centre of rare disease work.
Hannah uses her perspective as a parent and advocate to help ensure rare disease patients are front and centre in research, policy, and care. She 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, part of the Patient Advisors for Genomics Education (PAGE) group, and a member of Beacon’s Patient Group Engagement Committee. She also volunteers with TANGO2 UK and recently organised the charity’s first weekend away for families to connect, share, and support one another. Hannah believes that patients and families must be partners, not afterthoughts, in shaping care and research.
Carl Lander
Director of Research, PKDIA, Co-Chair
Carl Lander RN, MSc. (Advanced Health and Care Management), Director of Research, Pyruvate Kinase Deficiency International Alliance. Carl is Co-Chair of Metabolic Support UK and helps lead the next steps for MSUK.
Having been diagnosed with a rare form of anaemia (Pyruvate Kinase Deficiency) at the age of four, Carl has experienced a wide range of treatments over the years. Having spent hos career in nursing and health service management. He is passionate about advocating for the lived experience of people with a rare disease and their carers.
Carl is also the Research Director of Pyruvate Kinase Deficiency International Alliance and supports the PK deficiency community to use evidence for advocacy.
Carl is currently undertaking a PhD with Swansea University to explore the use of patient reported outcome measures in inherited metabolic disorders.
CAROLE SCRAFTON
Director & Co-Founder
Carole is a patient with chronic and genetic rare disease, Patient Partner, Expert Patient, Patient Speaker, Author and Researcher. She is the CEO & Co-founder of FibroFlutters Patient Advocacy Organisation for chronic / rare illnesses. Helping to develop, nurture and advocate for a multidisciplinary approach to all aspects of medical healthcare so that chronic illness & rare disease patients can receive the type of care and treatments that they need. Carole utilises varying social media platforms to support people with Chronic illness & Rare Disease, #notjustpatients, and with a multi-stakeholder following. A network used for raising disease awareness and sharing as much up to date information. Carole also advocates for patientcentricity, especially patient engagement best practices and the need for patients to be included within research at early development / preclinical phases. She recognises the need to help educate patients about clinical trials and the reason why they should get involved. Recently as a Patient, and with FibroFlutters, was a team member of an initiative to create: ‘How-To guide’. How to implement Patient Engagement into Early Development and Preclinical phases with Patients Focused Medicines Development.
STEVE CLARK
Founder and Patient Advocate
Steve Clark was diagnosed with stage 4 colorectal cancer in 2013 and has since become an active patient advocate. He is a regular speaker for audiences of patients, healthcare professionals, researchers, and industry representatives as well as volunteering with several charities including being a Campaigns Ambassador for Cancer Research UK. Steve is a patient representative to several studies and study groups and has been co-author on a number of papers. In 2017 he set up www.StriveForFive.org, a not-for-profit organization with the mission to give hope to fellow patients with stage 4 cancer and to advocate for improved care for those with advanced cancer. He is a business and marketing consultant for the pharmaceutical industry with Redwood Brand Curators and has worked in UK and global pharma for over 35 years in business management and global marketing. Steve is a former Chairman of the Pharmaceutical Marketing Society and was awarded Healthcare Communications Advocate by Communiqué.
DR LIZ CLARKE
Visiting Lecturer and Patient Engagement Theme Lead
Centre for Pharmaceutical Medicines Research, Kings College London
DR LIZ CLARKE
Visiting Lecturer and Patient Engagement Theme Lead
Liz Clark is Visiting Lecturer and Patient Engagement Theme Lead at the Centre for Pharmaceutical Medicines Research within the Institute of Pharmaceutical Science, School of Cancer & Pharmaceutical Sciences at Kings College London Following Medical Qualification and a short period in clinical medicine, Liz spent 28 years working in pharma. Her career encompassed a variety of roles in both commercial and scientific functions, predominantly in Medical Affairs and most recently in Patient Engagement. She left her final Industry role as Vice-President of Medical Affairs at Norgine Ltd. in 2021 and now undertakes a wide-ranging portfolio of activity as an independent pharmaceutical physician. This comprises her role at Kings, patient engagement consultancy, delivery of training and coaching and as one of three Appraisal Leads and Educational Supervisor for the Faculty of Pharmaceutical Medicine. She has recently led the formation of a working group on patient and community engagement at FPM. Her work in patient engagement was recognised in the WEGO Awards 2021 where she was a finalist in the ‘Champion for Patient Engagement’ Category. Liz’s research interests lie in the pragmatic involvement of people affected by health conditions in all aspects of the development and use of medicines, devices and other healthcare interventions, and sharing of best practice in this field. In addition to lecturing and supervising dissertations on the pharmaceutical medicine MSc courses, Liz is in the process of developing stakeholder networks to promote partnership working with patients and communities in medicines development and healthcare both within the Centre for Pharmaceutical Medicines Research at Kings and in collaboration with pharma and the broader stakeholder community.
Rasmus Hjorth
Patient Engagement Director
Rasmus Hjorth has several years of experience working with engaging patients in clinical research as Head of Communication in the patient recruitment company, James Lind Care. His work experience centers around how to engage patients in clinical trials which includes working with developing services and communication that increases the awareness and interest about clinical research among patients. He also has years of experience developing advertisement- and information material for recruiting patients to clinical trials, resulting in engaging thousands of patients in several clinical trials.
Rasmus holds a Masters degree in communication and besides his job as Head of Communication in James Lind Care he is also a member of the board in the Danish Lung Patient Association.
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