Speakers

Michèle Bartlett is a psychotherapist and writer. Diagnosed with Parkinson’s disease six years ago, she has been an active contributor to a broad range of research initiatives. Drawing on her experiences of participating in a number of clinical trials and studies, she is a passionate advocate for integrating patient perspectives into research at all levels. She is Deputy Chair of the PPIE working group for the EJS ACT-PD initiative: developing the first multi-arm, multi-stage trial for potential disease modifying treatments for Parkinson’s disease in the UK. She is Co-Chair on behalf of PwP on the Critical Path for Parkinson’s Advisory Council for Patient-Centric Endpoints.

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Rita Botelho, a 40-year-old Portuguese product and jewelry designer from Porto, became a passionate advocate for Parkinson's disease research after being diagnosed with Young Onset Parkinson's Disease in early 2023. Her diagnosis, caused by the LRRK2 genetic mutation, inspired her to get involved in multiple research projects and to join groups such as Young Parkies Portugal and the Parkinson's Europe Research Steering Group. In addition to her advocacy, Ms Botelho founded her own jewelry brand, Piino, in 2019. She crafts each piece by hand using precious metals and polymer clay, drawing on her international experiences in Japan, Italy, Switzerland, and Germany.

Hayley Chapman is a Senior Program Director with Patient Focused Medicines Development (PFMD). She has a Masters in Health Science from the University of Toronto and has worked in the healthcare sector for over 25 years focusing on the development and evaluation of partnerships between life science companies, patients, and patient organizations.

With PFMD, Ms Chapman leads several key strategic initiatives including Patient Engagement Activities in the Post Launch Phase, Monitoring Patient Engagement to Learn Strategies, and Patient Engagement & Patient Experience Data Fusion. These projects include co-creation with global, multi-stakeholder working groups to ensure that what matters most and is important to patients, family members, and caregivers is incorporated into decision-making for product development and within the healthcare system.

Ms Chapman not only has a professional interest in patient engagement but has also contributed to several provincial and national Advisory Boards sharing her caregiver perspective following her son's cancer diagnosis and treatment. She is currently a member of both the Oncology Family Advisory Council and the Patient and Family Advisory Council at Sick Children's Hospital in Toronto.

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Joana Claverol , is the Clinical Research Director at Barcelona Children’s Hospital Sant Joan de Déu, Spain, where she leads the clinical trials office since 2012 and the Patients engagement in research area since 2015. The Clinical Research Unit is a reference unit for pediatric patients nationally and internationally, specializing in innovative treatments for highly complex patients with rare pediatric diseases. She has more than 13 years of experience in medical and clinical research in the pharmaceutical and biotechnology industry, with special knowledge and experience in drug development and clinical trial design, and all regulatory and methodological aspects related to clinical research. She holds a postgraduate in Senior Management Program of Health Institutions by IESE Business School, a Master in Pharmaceutical Marketing by Universitat Pompeu Fabra, a Master of clinical trials at Universitat de Barcelona and a BS Degree in Biological Sciences by Universitat Autonoma de Barcelona.

Emily Clifford is a Senior Project Manager for the Research Services Department at the Center for Information and Study on Clinical Research Participation (CISCRP). She is responsible for planning, executing, and moderating patient advisory boards and various other patient engagement activities, which provide insights to support recommendations in the design and/or improvement of clinical trials. She spearheaded analysis and reporting of CISCRP’s 2023 Perceptions & Insights Study. She holds a BS in Biochemistry and Molecular Biology from University of Massachusetts Amherst and a MSPH in Global Disease Epidemiology and Control from Johns Hopkins University.

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A skilled researcher with more than 20 years ‘experience working in the pharmaceutical industry across many different areas. Dr. Dews believes that research should be accessible, understandable, and co-designed and she has a track record of working with patients and organisations to develop shared scientific priorities and outcomes that matter.

David Dexter is an Associate Research Director at Parkinson’s UK and Professor of Neuropharmacology at Imperial College London. Over the last three years, He has managed funding strategy for the largest patient-led charity for Parkinson’s in Europe, bringing a fresh, holistic approach to grants and research funding, from drug discovery to late-stage clinical trials.

Having completed a PhD in Neuropharmacology on the role of iron and oxidative stress in the aetiology of Parkinson’s disease, his professional career started at Imperial College London, initially as a Lecturer, progressing to Professor in 2012 and Deputy Head of the Division of Brain Sciences in 2014.

Here, he unified teaching, research and funding with the creation of a new dedicated neuroscience division that consolidated knowledge from six sites, attracted new talent, expanded course offering, and initiated a PhD succession pipeline.

During this time, Mr Dexter founded Parkinson’s UK Brain Bank that contributed to new drug discovery, advancing scientific development with a clinically acclaimed global tissue resource. He grew registered donors by raising awareness and devised innovative approaches to educate the public and promote the cause.

Mr Dexter have played a key role in drug discovery, identifying three of the six recognised processes which are thought to cause Parkinson’s, and clinically testing iron chelators to slow Parkinson’s. Since joining Parkinson’s UK, he has transformed peer review processes for grant applications, and funded £15M of virtual biotech projects that have fast-tracked drug development with a unique funding model.

His leadership experience has provided me with a unique perspective, and as such, he took a pragmatic view on ways to add stakeholder value, create solid platforms for growth, and commercialise discovery-led research.

Mr Dexter has published extensively and regularly presented at international Neuroscience and Parkinson’s conferences.

Victoria DiBiaso, MPH, BScN, has 20+ years of clinical research experience. She holds a Master of Public Health and is a nurse by training. She has been awarded the distinction as one of the Top 20 Industry Innovators for her efforts to integrate insights from patient communities and clinical trial institutions into R&D decision making. Her work has been highlighted in the Wall Street Journal, various publications and keynote speeches.

More than a decade ago, she was one of the first industry leaders to establish a series of trial site & patient networks to provide advisory expertise to development staged clinical programs. These upfront partnerships have help transform the company’s development model whereby the therapies of tomorrow are not simply developed for patients but rather in partnership WITH patients and their stakeholders. This is reflected in the full end to end integration of patient experience and priorities across 100% of all indications, development programs and clinical trials at Sanofi; including prioritization decisions in the preclinical space.She recently established, and Chairs, the US based PALADIN Consortia bringing together advocacy and industry leaders to optimize collaborations that hold the potential to transform the pace of medicines development.

Ms DiBiaso is also an active research volunteer and advocate for the Parkinson’s Disease community. Aside from supporting clinical research education efforts, she has run 4 marathons and climbed Mount Kilimanjaro on behalf of Parkinson’s research and awareness.

Mark is the founder of A Life in a Day, a unique immersive experience where you become the patient and experience the challenges, choices and impact that real patients face every day. Driven by a belief that healthcare works best when it centres around patients’ needs, Mr Doyle designed A Life in a Day to support the pharmaceutical and healthcare industries in developing patient-centric strategies for more impactful engagement.

Dr Patrick Gallogly (he/him), MB BCh BAO (Hons), MSc, MRCP (UK) is a medical advisor for Pfizer UK’s oncology medical affairs team. As part of his non-promotional role, he provides UK medical support throughout a medicine’s life cycle, including liaising with the healthcare community to communicate scientific data and identify areas of unmet medical need as well as supporting with clinical trial site set up. He is a passionate LGBTQ+ advocate, and has taken on diversity, equity, and inclusion roles within Pfizer, as well as partnering with patient organisations to help address healthcare inequalities faced by this community. He obtained his medical degree from Queens University Belfast, and prior to entering the pharmaceutical industry he spent seven years working as an NHS doctor. He is a member of the Royal College of Physicians (UK), and has a master’s degree in clinical and health sciences with ageing from Newcastle University.

Andrew Garvey leads GSK’s global work with patient organizations (excluding the US). He is responsible for leading the work to develop collaborations with patient organizations to bring patient insight into GSK, improve the management of diseases and to strengthen the capabilities of patient organizations. Mr Garvey has worked at GSK for 20 years in sales and marketing, public affairs and communications roles before leading on first GSK’s patient advocacy work in the UK, then across Europe and now globally.

Annie Gilbert is the Global Patient and Site Engagement Lead at Boehringer Ingelheim responsible for shaping, developing, and implementing patient and site journey strategies during clinical development, to create customer value across all countries and regions. Previously Global Patient Advocacy Relations Manager at Boehringer Ingelheim and Patient Research Manager at Merck, Ms Gilbert is an established and well published patient advocate and researcher with 30+ years’ experience in the pharmaceutical industry including more than 20 years in Patient Engagement. Other roles include Global Market Access Manager with Lundbeck A/S in Copenhagen and Public Affairs Director with Cello Communications, UK. She has managed numerous advocacy and patient access projects on behalf of healthcare organizations including measuring patient experience in Ovarian Cancer and studying access to treatments and services for people with Rheumatoid Arthritis and Ankylosing Spondylitis. Specialties include developing and managing patient access strategies through stakeholder engagement, identifying the barriers and enablers to better service delivery, and providing the evidence needed to advocate effectively for change. 

Nichola Gokool has deep understanding of the medical communications market with over 17 years’ experience in the healthcare/pharmaceutical industry and has been with Parexel for 12 years. She works as a Senior Director, Patient Partnerships and has supported a number of patient-centric activities, including the formation of the Parexel Patient Advisory Council in 2019. Mr Gokool is passionate about driving innovation in patient and physician communication activities ensuring we can adapt to and respond to the evolving needs of our important clinical trial stakeholders. Prior to working in the healthcare industry, she trained as a Dietitian and worked in adult and pediatric dietetics for a number of large London teaching hospitals, including Guy’s and St Thomas’. Ms Gokool holds a First Class BSc in Nutrition and Dietetics from the University of Surrey, UK and a Professional Diploma in Marketing. She regularly publishes at medical communication conferences. She was appointed on the ISMPP Board of Trustees (2022) and serves as co-chair on the ISMPP Patient Engagement Taskforce.

Jamie Goldfarb was diagnosed with Stage IV melanoma in January 2011, when her son was just 11 weeks old. Upon diagnosis, her oncologist told her that he would do everything in his power to buy her 6 more months. Ms Goldfarb joined a clinical trial at the National Cancer Institute (NCI) and is now completely disease-free. Having worked in patient recruitment for 8 years and having her own life saved by a clinical trial, Ms Goldfarb's personal mission is to spread information about the importance of medical research as far and wide as possible. To this end, she is involved with the Melanoma Research Alliance, the Melanoma Research Foundation, the Melanoma International Foundation, CISCRP, the Alliance for Regenerative Medicine, the Association of Clinical Research Professionals, and Imerman Angels. She also serves as a research advocate for NCI, and works one-on-one with people with cancer to help them navigate their treatment options, including clinical trials.

Heidi Green, PhD, MSci, has spent her professional career dedicated to practicing creative research methods that identify barriers and enablers to facilitating inclusive clinical research. Dr Green has a PhD in Applied Health Sciences, specializing in patient recruitment to trials, and before joining COUCH spent eight years working within an academic research environment at the University of Aberdeen’s Health Services Research Unit which won the Queen’s Anniversary Prize for Higher and Further Education in 2018. Her work aims to increase the level of high-quality inclusive clinical research, with the goal of one day ensuring that everyone has an equal opportunity to participate in clinical research.

Sarah Griffiths, PhD, leads the Patient Engagement and Policy Team at Oxford PharmaGenesis, who are committed to advocating for continued improvement in healthcare, for the benefit of all. Dr Griffiths works closely with patient and client partners on projects that have touch points throughout the drug development process, and across functions within the pharmaceutical industry - empowering patients, caregivers and other stakeholders to have a demonstrable impact for all parties. Dr Griffiths is passionate about clear, tailored and inclusive communications, co-creating with patients and caregivers to ensure representative insights shape decisions and outcomes.

Dr Geraldine Grove, Study and Digital Solutions, AstraZeneca - has an extensive career in pharma and biotechnology spanning over 20 years. Her journey has predominately focussed on clinical strategy and operations however in recent years she has moved to lead a group responsible for the implementation of technology in clinical trials.

Technology plays an important role in trials today and in society as a whole, with the team at AstraZeneca she hopes to bring reality to delivery and better meet the needs of patients and sites.

Emily Hardie is a Senior Clinical Research Associate at Kyowa Kirin International. With 10 years of experience in managing and overseeing clinical operations, she currently leads two real-world evidence studies as part of the Health Economics Outcomes Research (HEOR) team. In her role, Ms Hardie collaborates closely with the project team, contract research organizations (CROs), and investigators to ensure successful study delivery in alignment with study plans and guidelines. She is passionate about leveraging real-world evidence to generate meaningful insights and contributing to evidence-based healthcare decision-making. She is dedicated to advancing patient-centric research and driving innovations for improved patient outcomes. Ms Hardie holds a BSc in Psychology from the University of Leeds.

David James, Director of Patient Projects and Influencing, has been with Prostate Cancer Research (PCR) for over 3 years. During this time, he established and grew the Patient Projects and Influencing departments, developing a programme of work which focuses on supporting and empowering those with low health literacy and underserved communities, and championing greater equity in research and care. As part of this work, he developed a new educational platform, the infopool (www.theinfopool.co.uk), which focusses on providing easy-to-understand information and tools on diagnosis, treatments, side effects and more, including a clinical trial finder developed with ancora.ai. In just one year, the infopool is already being used in 150+ NHS hospitals and had 115,000+ visitors. Mr James has led on several projects with industry partners focussed on developing patient-friendly and accessible information, protocol and study reviews and the creation of tools to empower patients to make more informed decisions about participation in research. He is also leading on PCR's first-of-its-kind patient data platform, Prostate Progress (www.ProstateProgress.org) - a project that is linking patient- reported and clinical data to facilitate integrated patient-centric research, and to serve as a centralised and standardised repository of prostate cancer data to be utilised by healthcare providers, researchers, and patients. Prostate Progress has been announced as NHS England’s first Driver Project in its Data for R&D Programme and launches June 17. Before working at PCR, Mr James spent close to a decade in political and community organising and project management, in the USA, Middle East and South Asia.

With over 15 years’ experience, Michael Ward, a Director in Syneos Health’s Patient Recruitment and Retention Management team, is leading a team of patient recruitment experts to develop and execute data-driven recruitment strategies that overcome the challenges and barriers seen on complex clinical trials that are struggling to meet recruitment timelines.

As Senior Director for R&D Patient Science, Lisa Kerr is leading the development of AstraZeneca’s R&D Patient Centricity Framework within the Chief Medical Office. With over 20 years' experience in Pharma, across R&D, Digital and Operations, leading the development of some of AZ’s most complex products, she is now focused on driving scientific and digital innovation with a passion for people to bring the voice of patients into into the heart of clinical trial design and execution in AZ.

Ms Kerr is also a key leader in I&D, as Founder and Executive Sponsor for Safe Space – AZ’s Mental Health Awareness Employee Resource Group, which has grown to over 3,500 members with Chapters in 5 continents. She has raised the profile of mental health within AZ, including co-development with Microsoft of the HealthyMind app in MSTeams - so all employees can simply access the relevant mental health support in their locations, in their languages via a digital flowchart. Recognizing when suffering from mental health issues, finding information in complex suites of brochures and websites is challenging even for highly educated technology literate professionals… the app was designed with patients, for patients.

Her drive to combine science, technology with a human-centric approach underpins her ambition to transform AZs R&D process to deliver Patient-Centric and Inclusive trials, that also make a positive measurable impact on health outcomes and the business. Outside of work, apart from being a mum/step-mum to three teenagers she can usually be found walking her dog, singing, cooking and eating or all of the above!

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Samantha Knott has worked in the pharmaceutical industry for more than 20 years. She has held leadership positions in Medical Information, Medical Communications and most recently in Global Patient Partnership. Her current role involves embedding holistic patient insights into key decision points across the end-to-end lifecycle of a molecule.

Emma Lane is a Global Patient Engagement Lead for gene therapy at UCB Pharma and is also Honorary Associate Professor in Neuropharmacology at Cardiff University. She started out with a PhD in the neuropharmacology of Parkinson’s disease at King’s College London, subsequently taking an opportunity at Lund University in Sweden to develop research in cell therapies. After moving to Cardiff University School of Biosciences as a post-doctoral researcher, she then established a successful preclinical research group modelling ATMPs in Parkinson’s. Ms Lane also led the LEARN Study group, exploring the patient experience of clinical trials, specifically in pharmacological and ATMP-based products for neurodegenerative diseases. This work included co-production of resources with trial participants to improve communication around trial delivery to enhance future recruitment and retention. Throughout her academic career she built a strong network in patient engagement in her preclinical and clinical research. In her role at UCB she now works in Early Evidence Strategy seeking to bring patient engagement early in the drug development pipeline.

All medicines development should have but one goal: To make treatments that matter accessible to patients. This has been – and continues to be – the guiding principle of Anders Lassen’s professional focus. With a background in public health and law, he has worked with the patient voice in various settings, including healthcare systems research, medicines regulation and the pharmaceutical industry. Today, he is heading the Patient Insights group at Lundbeck, striving to make the patient voice actionable in brain disease and enable a strong patient focus in the company’s research and development activities.

Emma Lawton was diagnosed with Parkinson’s at the age of 29. Making it her mission to raise awareness about the condition and continue her life as she planned, Ms Lawton campaigns and shares her story on social media, published her own book on dealing with Parkinson’s and recently video blogged her life for 365 days.

In 2020, she did something new every day and blogged about it at www.thef---itlist.com to shine a light on the importance of investing in our own development and happiness. She featured in the BBC2 documentary: ‘The Big Life Fix’ where Microsoft’s Haiyan Zhang created a bespoke wearable device that allowed her to write and draw for the first time in years. Ms Lawton saw first hand the power of technology as an enabler. In 2015, she won the CharityComms Inspiring Communicator award for her fundraising for Parkinson’s. She is one of MT’s 35 women under 35 and has been dubbed ‘One to Watch’ by Wired Magazine. She was shortlisted for a Woman of the Future Award and is a 5-time TEDX speaker.

She’s shared a stage with the likes of Theresa May, Steph McGovern and Microsoft CEO Satya Nadella and has been interviewed on everything, from BBC Breakfast to late night radio shows. Ms Lawton is co-founder of tech startup More Human, a venture she started as part of the zinc.vc cohort. More Human is the AI events engine for communities, where the software turns everyone into a successful organiser of high- quality, well-attended events.

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Sarah Lucas-Eaton is the Patient Strategy Director at Lumanity, where our goal is for patients to be recognized as formal partners and stakeholders in medicine development and healthcare. Ms Lucas-Eaton works closely with our client and patient partners to develop actionable strategies that embed the patient voice and patient engagement across the drug development process. Ms Lucas-Eaton passionately believes that storytelling is one of the most powerful educational tools we have.

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Richie McCann is Global Head of Budgeting and Site Payments at Greenphire. Mr McCann has been in the SaaS (Software as a Service) industry for over 15 years, beginning his career at Salesforce. Whilst there, he learnt the value of understanding his B2B customers' business challenges and making their consumer journey the absolute focus. Over five years ago, Mr McCann made the jump into the life sciences industry joining Veeva, and leveraging these learnings to help sponsors and CROs become more efficient and patient focused. Today, Mr McCann collaborates with clients to strategize how financial technology automation can deliver tangible ROI and produce data-driven insights required to drive business process improvement.

With a master’s in public health specialized in healthcare management and postgraduate studies in medical law and bioethics, Ewa McHale brings a robust academic foundation to the field of clinical trials. Currently serving as the Director, Global Clinical Solutions at AstraZeneca Canada, she oversees the improvement of operational processes and the implementation of technology in clinical studies. Ms McHale experience includes roles in clinical operations and development, with a focus on oncology trials, and a commitment to integrating patient partnership in trial design and execution.

Sarah McKeown-Cannon (she/her/hers) is an expert in Clinical Trial Experience (CTE), providing innovative patient recruitment and engagement solutions that enrich study experiences and deliver measurable results. In 2016, after gaining experience at Langland’s UK headquarters, Ms McKeown-Cannon opened Langland’s New York office. She now leads the development of global clinical trial programs across a wide range of therapy areas, from oncology and cardiovascular to rare disease and beyond.

Ms McKeown-Cannon is driven by her commitment to making a difference in people’s lives, by understanding all the dimensions that make us human and translating that into meaningful engagement. Her work inspires clients to think further, always pushing the boundaries of what’s possible in clinical trial design, challenging the status quo to accelerate clinical development timelines and ensure global diversity.

Ms McKeown-Cannon’s expertise and passion for improving the lives of others can be seen through her dedication to elevating the voice of those underrepresented within clinical trials, telling meaningful stories on the impact of inclusive clinical trial design. Her recent speaking engagements at the Summit for Clinical Operations Executives (SCOPE), SXSW and Patients as Partners highlight her passion for sharing new and innovative ways to make a difference to patients globally.

Erica Mercado brings more than 15 years of patient recruitment and engagement experience to her role at BBK Worldwide, where she serves as Director of Growth Strategy and oversees the development of strategic programs to support successful study enrollment. Ms Mercado creates and deploys innovative and successful strategies that generate awareness and engagement surrounding clinical research for study sponsors, advocacy organizations and patient thought-leaders. Prior to her current role, Ms Mercado served as Senior Account Supervisor, ensuring patient recruitment and engagement efforts achieved performance goals. She has also served as BBK’s Director of Innovation, playing an integral role in product development – anticipating, developing and delivering innovative patient recruitment and engagement technologies to improve the clinical trial experience. In 2018, Ms Mercado was selected as one of the top 100 most inspiring people in the life sciences industry by PharmaVOICE magazine, in recognition of how she inspires and motivates those around her, her influence as a corporate leader and her positive impact on the industry through her actions.

Accomplished professional with over 20 years of experience in clinical research in various roles (Clinical Operations, GCP Compliance, Transparency and Disclosure and Digital Innovation). Ms Minetti is currently working at Chiesi Farmaceutici in the R&D Global Clinical Development department, where she most recently started in her new position as Patient Research Partner, responsible for building and integrating a more patient-informed approach in clinical development

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Kate Moss joined Baringa as a partner in 2019 to lead our Pharmaceuticals and Lifesciences practice. She brings with her over 30 years of industry experience and a strong mix of advisory and delivery skills. She is deeply influenced by her first decade in industry which underpins her focus on what really matters, her desire to improve performance and collaboration to deliver growth.

Having worked internationally with large global enterprises and start-up biotechs, she understands the opportunities and challenges which result. She’s keen to help her senior clients realise their ambitions or advise them through crises or transformation.

Ms Moss leads business strategy, performance improvement and cultural change projects across multiple departments or enterprise wide for pharmaceutical and life sciences companies. She’s well known for helping clients deliver challenging, complex, multi-year efforts, defining radically different operating models and breaking down siloes to create collaborative cultures. Ms Moss stays current by mentoring start-ups harnessing new technologies, data and innovation in their products. She uses the insights she gains from this to develop and implement new ways of working for her own clients.

The organisations that Ms Moss works with are complex, spanning multiple divisions, countries, and regulatory environments. Each company has unique requirements, for which Ms Moss tailors both strategic solutions and tactical delivery, helping to solve her clients’ problems while keeping the intricacies of their business front of mind. In her experience, listening to and truly understanding is the only way to create sustainable change.

Daniel Newman is an award-winning diabetes advocate, host and producer of The Talking Type 1 Podcast. Mr Newman has been living with type 1 diabetes for over 27 years and has experienced both the highs and lows of living with the condition. Mr Newman served as the type 1 diabetes patient representative on the NICE guidelines update committee regarding access to glucose monitoring technology. In his advocacy work, Mr Newman has worked in a patient advocate capacity for several organisations including Diabetes UK, Kidney Research UK, NHS England, Boehringer Ingelheim and Roche.

Kate Oliver is the Senior Manager for Clinical Trials at Cellectar Biosciences, Inc. bringing more than 20 years of clinical research experience. Previously, she was a Program Manager for an early phase oncology group at a large academic institution, managing study start up and program activities. At Cellectar, Ms Oliver has played a significant role in clinical operations, trial development, and oversight of CROs. She feels that a patient-centric approach to execution of clinical trials is a pathway to success.

Sheetal Padania is Head of Patient Services at Origins, the patient focused specialist agency. Origins transforms our client’s strategies and results through connecting them with the power of the patient. Our patient focused work delivers significant incremental value across medical, clinical development and regulatory approval and market access around the globe. We enable our clients to truly put the patient at the heart of everything they do and realise greater success as a result. Ms Padania works closely with our clients and patient experts to design programmes that create value and leverage the power of the patient.

Ylenia Paleari, PhD, is a rare disease expert with almost a decade of experience in the industry. She has worked at Chiesi Farmaceutici SpA for five years, leading the Global Rare Diseases R&D Patient Engagement team. Her team is responsible for incorporating the patient perspective into every aspect of the drug development process. With her deep knowledge of the rare disease space and experience in academia and industry, Dr Paleari is committed to translating basic scientific research into effective therapeutic interventions. She has held various positions in academia and industry and moved from pre-clinical to clinical research. In addition to her work at Chiesi, Dr Paleari serves as a local patient association board member dedicated to raising awareness about rare cancers. Dr Paleari is passionate about making a positive impact in patients' lives, and her work reflects that dedication.

Zack Pemberton-Whiteley is Executive Director, Global Patient Engagement Centre of Excellence, at Novartis. The Centre of Excellence team works to enable patient engagement across the medicines lifecycle in the areas of Insights and Measurements, Capability Building, and Framework design and Governance.

Mr Pemberton-Whiteley is a qualified Barrister with a Law Degree from University of Liverpool and a masters from the University of Law.

Prior to joining Novartis, Mr Pemberton-Whiteley previously worked in non-profits and patient advocacy, most recently as Chief Executive Officer of Leukaemia Care in the UK. Alongside this he was also Founder and Chair of the global Acute Leukemia Advocates Network, Chair of the Blood Cancer Alliance, Vice-Chair of the European Hematology Association Patient Advocacy Committee and a member of the CML Advocates Network steering committee and Community Advisory Board (CAB), the Workgroup of European Cancer patient Advocacy Networks (WECAN), and the European Cancer Organisation Patient Advisory Committee (ECO PAC).

Since 2021, Giulia has focused on patient engagement, specializing in converting patient insights, perspectives, and unmet needs into strategic outputs for companies.

Since 2018, Ms Pierini has been a consultant for the pharmaceutical and medical device industry, working on over 50 strategic projects across therapeutic areas including immunology, dermatology, respiratory and oncology and rare disease. Prior to her consulting work, Ms Pierini spent four years in marketing and sales for big Pharma, and two years as a cellular biotechnology and hematology researcher at the University of Rome La Sapienza.

Having also worked in an operating room for several years during her experience in sales, Ms Pierini is a fierce supporter of how business functions impact patient experience and she believes that clinical treatment and brand strategies will continue to evolve until they’re chiefly focused on patient expectations.

Léa Proulx is a scientist by training and has been working at Roche for 10+ years. She's currently working as the Patient Voice Partner within the early Research and Development group. Her role consists of working with Project Team in early clinical research to ensure Patient Communities are an active partner when teams are discussing early development & clinical strategy, taking into account a deeper understanding of patient and caregiver needs. The idea behind this early and systematic partnership is to co-creating innovations and solutions that matter to the Patient Community. She truly believes in having a trustful, long-term partnership and collaboration between patients, industry and other stakeholders where everyone has the opportunity to have their voice heard in order to improve outcomes for patient communities and support shaping the healthcare ecosystem of tomorrow.

Rubi Rodriguez Nieto is a social anthropologist, activist, doula and mum. She works as a Community Services Manager at Birth Companions. She has experience working in the charity sector supporting pregnant women who experience multiple disadvantages, migrant women and girls, women and children survivors of domestic abuse, and overseas communities doing environmental conservation.

Currently, over 2.5 million people in the UK are living with cancer including Alfred. Just over nine years ago, a diagnosis of advanced metastatic prostate cancer stage 4 was handed down to him unexpectedly, untimely and unwontedly. For the voiceless Alfred Samuels is the voice that echoes hope, motivation and inspiration in the fight against the deadly disease of prostate cancer; a disease that disproportionately affects black men. 

Alfred is a Businessman, Entrepreneur, and Keynote/Public Speaker who is dedicated, ambitious, hardworking and passionate about life, business, success and the community. He thrives each day on seeking new opportunities and challenges with the desire to achieve. 

Alfred has written two books, “Invincibility in the Face of Prostate Cancer: Coming out the Other Side,” and “Motivated to Inspire,” with the intention to inspire, motivate, uplift and educate people about prostate cancer. Through his books, it is Alfred’s wish to influence people and make them realise the value of the information that he has recorded. Since being diagnosed with advanced prostate cancer in 2012, Alfred has dedicated himself to raising awareness of the importance of research. To that end, he has thrown himself into patient involvement, becoming a media volunteer, a cancer campaigns ambassador, and a member of both CRUK’s Patient Involvement Network and the Research & Strategy Sounding Board. 

In July 2019 Alfred was named Ambassador of the Year at the Cancer Research UK Flame of Hope awards which pay tribute to the extraordinary achievements of volunteers across The UK. Alfred sees this as not only an award for him but also, all other ambassadors and volunteers that relentlessly give their time in a bid to help others regardless of race or creed. 

Soren E. Skovlund, PhD, is the Senior Director and Head of Patient Partnering and Strategy of Patient-Centered Research at Evidera, PPD. Dr Skovlund designs and leads systematic patient partnering and innovative patient-centered strategy initiatives spanning clinical trial and real-world settings to accelerate and improve research success and impact. He is a long-standing advocate for engaging patients as partners in multi-stakeholder efforts to achieve equitable access to optimal therapy and care working across clinical research, academic, private and public settings. He is a patient-centered research scientist with more than 45 published articles focusing on patient engagement, patient-reported outcomes and psychosocial aspects of living with illness. Dr Skovlund was awarded the EyeForPharma Lifetime Achievement Award in 2016 for his long-standing pharma industry leadership to advance patient-centricity.

Dr Skovlund was awarded the medical doctorate degree in patient engagement in health research in 2021 from the University of North Denmark, Denmark. He is the chairman of the European Working Group for Patient Reported Outcomes in Diabetes, advisor to the International Consortium of Health Outcomes Measurement (ICHOM)s on patient centered outcomes, advisor to the EU-IMI National H2O PRO Observatory Initiative, co-author of the global quality guidance for patient engagement in medicines development of PFMD, and past founding member of the EUPATI (European Academy for Therapeutic Innovation) and member of the Pan-European EFPIA Patient Think Tank.

A native of Philadelphia, Susan Thornton spent 28 years in the healthcare information technology field in various consulting, sales and marketing positions. She is a cutaneous lymphoma patient and first began her involvement with the Cutaneous Lymphoma Foundation as a board member in 2008. She moved into a consulting role with the Foundation in 2011 focusing on managing the Foundation’s programs and services. In May 2012, Ms Thornton assumed the role of Interim CEO and was appointed permanent CEO in July of 2012.

Outside of her professional endeavors, she has been active in many non-profit organizations in the Philadelphia region, holding Board positions at the Eastern Pennsylvania Chapter of the Sierra Club, The Leukemia & Lymphoma Society Eastern PA Chapter, and was one of the original members of the Tristate Multisport Association.

Ms Thornton holds a Marketing/Management degree from the University of Pennsylvania’s Wharton School, Certification in Fundraising from the University of Pennsylvania and recently received certification as an Archetypal Consultant from the CMED Institute in Chicago, Nutrition and Health Advisor certification from the Sanoviv Medical Institute, and Dream Coach Certification from Dream University in Los Angeles

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Rali Vaskova is a seasoned speaker at conferences like Festival of Biologics, EOCT, and has 6 years of experience with feasibility assessments, country and site selection. She is a passionate advocate for the efficient implementation of patient-centric feasibility processes for better clinical trial design and planning.

Robina Weermeijer is an accomplished professional with over 9 years of experience in pharmaceutical industry. She has held positions in Communications and Patient Engagement in which she worked with patient organizations in a range of disease area’s. Currently, she is focused on increasing diversity, equity and inclusion in clinical trials globally at Boehringer Ingelheim.

Ms Weermeijer’s passion for driving positive change in the healthcare industry is rooted in her belief in the power of collaboration and patient-centered care. She firmly believes that by truly listening to patients of diverse backgrounds, and the people around them, pharma can make an even bigger positive impact in people’s lives.

Sarah was diagnosed with Young Onset Parkinson’s Disease 5 years ago and finds her purpose inspiring others in the Parkinson’s community to continue to live their best life with a strong hope for a medical breakthrough.

For nearly 30 years she worked in the biopharma industry focused on Prostate Cancer, Lysosomal Storage Disorders (Gaucher Disease, Fabry Disease, MPS 1, Pompe Disease) and with Neuromuscular Specialists treating Spinal Muscular Atrophy.

Since her diagnosis Ms Zenner-Dolan has volunteered as an Ambassador for the Davis Phinney Foundation, a member of the Endpoints Working Group at Critical Path Institute, as a boxing coach at Rock Steady Boxing, and has participated in three clinical research trials.