Patient Advocate, Rare Disease Mental Health
David Ross is a patient advocate and rare disease male mental mental health collaborator. David’s activism began in 2017 when he was diagnosed with a rare disease called Cowden Syndrome due to being given a letter from his mother about getting tested before she passed away due to having the same condition.
After a period of coming to terms with this he became committed to raising awareness and supporting others impacted by this condition by helping set up a support group and also applying to join the Pten Foundation International Family Council which looks to helping my rare disease community by raising awareness about Cowden Syndrome.
In 2020 he attended 3 virtual Eurordis rare disease schools and is currently on the Findacure mentoring program. His latest project has been to set up rare disease male mental mental health International zoom calls for patients and caregivers and will be looking to set up an online support group for males in 2021
Global Patient Centricity Director, Ipsen
Pascale Cavillon, PharmD. BCMAS serves as Global Patient Centricity Director at Ipsen. Within the Global Medical Affairs Department, she supports the company to work with patients, for patients throughout the product life cycle from R&D to commercialization. In the past 3 years, she has built and structured the organisation to allow a collaborative work with patients by working directly with patient organization and supporting the Ipsen team to integrate patient voice into their work. Before this position, Pascale was programs director within global clinical development where she initiated the 1st patient advisory board. During the past 16 years, she has worked as a coordinator for regulatory submission and has managed programs, studies from Phase I up to Phase IV in the areas of neurology, endocrinology, oncology, woman health, and cardiovascular.
Patient Engagement Managing Director, Open Health Group
Leader and patient expert in multi-award winning, research led, patient engagement and health technology business.
Richard is a highly successful, commercially astute leader and problem solver with a proven track record in senior roles in the pharmaceutical industry and healthcare agencies.
Richard combines 20 years’ knowledge from GSK, AstraZeneca and Pfizer with 10 years specialist agency experience.
This unrivalled pedigree enables Richard to quickly understand his client’s business and offer innovative, differentiated and effective solutions. A senior executive, comfortable at operating strategically, above practice and respected by C-level customers.
Richard has a passion for crystallising issues on patient engagement and developing innovative and effective solutions.
Dr. Sumira Riaz
Lead Health Psychologist, Open Health Group
Our in-house healthcare professional Dr Sumira Riaz is a Chartered Psychologist, Registered Health Psychologist, Cognitive Behavioural Therapist and a Doctorate Research Supervisor at City University of London.
Sumira has 14 years of experience working within the NHS, charity section and healthcare agencies including Atlantis Healthcare and Hive Health.
Sumira is also part of the chronic pain team at Milton Keynes University Hospital. Here she works with patients diagnosed with pain and other mental health conditions such as depression and anxiety. Trained in Cognitive Behavioural Therapy, Sumira has accumulated 250+ clinical hours and understands the difficulties faced by people experiencing depression and the complicated pathways when accessing help and support. Sumira will input into the development of the research materials, support in planning the co-creation workshop and facilitation, lead on the analysis and bridge any gaps in knowledge.
Begonya Nafria Escalera
Patient Engagement in Research Coordinator, Sant Joan de Déu Children's Hospital (Spain)
She is Patient Engagement in Research Coordinator at Sant Joan de Déu Children’s Hospital (Spain). She has long experience in the field of the involvement of patients and families in research initiatives. She has also a personal story as a caregiver and patient advocate because is the sister of a young adult with cerebral palsy.
Her areas of expertise is focused on paediatric patients involvement in research and specifically in the field of clinical trials.
Other relevant background of her profile is: Fellow of EUPATI (first cohort), Coordinator of eYPAGnet (European Young Patients Advisory Group Network – www.eypagnet.eu), Coordinator of Kids Barcelona (YPAG of Sant Joan de Déu Children’s Hospital- www.kidsbarcelona.org), member of Children’s Medicines Working Party of EFPGCP, a volunteer member of the Editorial Board of Center for Information & Study on Clinical Research Participation (CISCRP), member of the Patients and Families working group of EnprEMA (European Network of Paediatric Research of EMA). Coordinator of the cross-cutting theme of patients involvement in Conect4Children project (pan-European paediatric clinical trials network).
The main aim of all the activities led or participated in by Begonya is to achieve a better quality of life for the paediatric patients’ thanks to research and new therapies.
Global Head Patient Engagement Center of Excellence, Novartis Pharma AG
Michaela Dinboeck heads the CoE for Patient Engagement in Novartis. The CoE provides thought leadership for Patient Engagement Standards and Frameworks, Capability building, Patient Insights and Measurements worldwide. High impact deliverables include the design and launch of the Patient Engagement Navigator, a OneStopShop for the “HOW to of patient engagement”. She led the work that delivered a company roadmap for strategic, systematic Patient Engagement along the lifecycle of medicines, including a framework for progress measurement and methods to convert patient derived information into true insights.
Michaela joined Patient Engagement in 2017 after 20-years in commercial and general management roles in the Healthcare Industry. She is a value driven leader with a record of designing and executing business growth and expansion strategies for emerging and established markets in country, regional and global roles. She puts a strong focus on capability building and access to innovative medicines.
In addition to her extensive Pharma experience, Michaela served 4 years as General Manager of Bolton Medical, a Spain based Medical Device startup dedicated to the worldwide commercialization of life saving, implantable devices, now incorporated into Terumo Corporation.
Michaela holds a Master in International Business from the University of Economics and Business Administration, Vienna. She has lectured at the Universidad Privada de Sta Cruz (UPSA), Bolivia and the Pharmacy faculty of the National University Malaysia. She lives with her husband and two children in Switzerland.
CEO & Co-Founder Patient Advocacy Organisation, FibroFlutters
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.
Lidewij (Eva) Vat
Researcher & Lecturer Meaningful and Sustainable Patient Engagement, Athena - Research and Education Institute
Lidewij Vat is Researcher and Lecturer Meaningful and Sustainable Patient Engagement at the Athena Institute. She is interested in creating and advancing person-centred health (research) systems and motivated by solving societal challenges with citizens and other partners. She is currently researching engagement initiatives to better understand the key conditions to transform research practices and health outcomes.
She is involved in projects which aim to enhance patient and public engagement in research, care and policy-making and works on health system studies. She contributed to the PARADIGM initiative, were she was responsible for developing tools for monitoring and evaluating value and impact of patient engagement. She was Training and Capacity Lead and Patient Engagement Lead at NL SUPPORT (SPOR Initiative – CIHR) were she led the development and delivery of innovative training programs and the development of a patient-centred research infrastructure.
As a lecturer and trainer, she teaches in a wide range of (master) courses. For example, Comparative Analysis of Health Care Systems, Clinical Trials and Healthcare, Containment Strategies for Infectious diseases, Disability and Development, and Patient-Oriented Research training modules.
Patient Engagement Lead ACE Region (Australia, Canada and Europe), Gilead Sciences
Richie Castles currently serves as Patient Engagement Lead ACE Region (Australia, Canada and Europe) at Gilead Sciences. Prior to joining Gilead Sciences, he was a Medical Science Liaison at Janssen.
Senior Representative MediPace
Dr Natasha Ratcliffe
Research Involvement Manager, Parkinson’s UK
Natasha is Research Involvement Manager at Parkinson’s UK, leading the charity’s patient and public involvement programme and supporting researchers across academia and industry to work with people affected by Parkinson’s to improve research outcomes. Natasha advises on methods and approaches to involvement and facilitates partnership working to help ensure that the expertise of people affected by Parkinson’s is incorporated meaningfully throughout all stages of the research process. She also works closely with other charities and external organisations, contributing to national and global initiatives to help drive forward the field of patient and public involvement in research.
former Vice President, Medical Affairs, Norgine
Liz Clark is an independent pharmaceutical physician, trainer and executive coach with over 25 years’ experience in Pharma. She has held both office and field based roles in Medical Affairs, Marketing and Sales Management, working with both medicinal products and medical devices. Most recently she established and led Norgine’s patient engagement initiative, applying her deep interest in behavioural science, personal empowerment and excellence to ‘bringing the patient into the office’. In her spare time Liz reads extensively and enjoys running and yoga.
Vice President, Liver Patients International
Robert Mitchell-Thain is a patient advocate of 18 years, with experience in a number of roles, including currently Patient Insights Director at the Global Liver Institute, Vice-Chair of Liver Patients International, the Patient Voice in NHS England’s Hepatobiliary and Pancreas CCG, and was recently leading patient-centred solutions as Head of Education and Development at PBC Foundation.
Robert has experience in taking the patient experience and incorporating it into clinical guidelines, abstracts, and journal papers, as well as into every day practice. He has presented at EASL, AASLD and APASL liver-specific conferences. He has also presented to and on behalf of patients in the USA, Canada, Israel, China, Japan, Israel, and all over Europe.
Robert has led a PBC-specific interactive App which can record GDPR-compliant anonymised data, allowing the patient experience to directly influence industry partners and help them to address unmet needs. Using the app data, he presented in poster and orally at a number of national and international scientific conferences.
He is currently working with GLI to design and release an interactive patient-driven App that will cover multiple liver diseases, giving patients equitable access to information and the opportunity to be part of the solution in their particular liver disease.
Cho Ee Ng
Research Fellow, NIHR PRC Newcastle
Cho Ee is a general surgery registrar at HEE North West (West Sector) currently undertaking his PhD research supervised by Professor Yiannakou at Newcastle University. He is working on enhancing patient recruitment to interventional trials by using remote healthcare technology at the NIHR PRC Newcastle.
Dr Oleksandr Gorbenko
Global Patient Centricity Director, Ipsen
Dr Oleksandr Gorbenko, MD, PhD, BCMAS, is an expert in public health, patient advocacy, and engagement with overall 20 years’ experience in pharma. He graduated as a medical doctor (general practice) in O.Bogomolets National Medical University and Shupyk National Medical Academy of Postgraduate Education and later worked on his PhD dissertation in the Ukrainian Institute of Public Health MOH. His experience across pharma includes several medical and commercial roles in representative offices of big biopharma companies (Nycomed/Takeda, Richter Gedeon, GSK) as well as senior global medical and patient affairs roles at GSK, ViiV Healthcare, and Ipsen headquarters/hubs in the UK. He has an additional experience with UN/UNFPA on equal rights, women empowerment, and combating gender-based violence, stigma, and discrimination. Over the last 7 years, Dr Gorbenko has been developing necessary patient-centric capacities/capabilities within R&D and corporate patient affairs focusing on getting insights, advice, and information from patient experts throughout the Medicine Development Continuum and a disease continuum/individual experience, collaboration with patient organisations, substantiation and inclusion of the specific PRO/PCO measurements, KPIs and standards of patient centricity for big pharma and other programmes. Since September 2019 Dr Oleksandr Gorbenko has been working as Global Patient Centricity Director at Ipsen.
Director and Founder, James Lind Care
Henrik Vincentz (MA Psychology) is co-founder of James Lind Care, the European patient organization specialized in clinical trials and has 20 years of experience in establishing online communities. His visionary outlook on trends such as the rise of patient centricity and user involvement in general, has made him a mechanism for pharmaceutical companies to find inspiration and guidelines in an attempt to implement a patient centric approach in their clin
Besides his role in JLC, he serves as vice chairman at The Danish Lung Association and is often requested to keynote by patient organizations and patient advocacy groups.
Dr Jennifer Harris
Head of Research Policy, ABPI
Dr Jennifer Harris, PhD works the Head of Research Policy at the Association of the British Pharmaceutical Industry (ABPI). Within the Strategy, Research & Partnerships Team, she leads on the development of ABPI’s R&D policy asks from discovery through to clinical research. In the past 3 years, she has furthered ABPI’s clinical research work, authoring the ABPI’s annual Clinical Research Report and advocating for industry’s views of how we can transform the UK and international clinical research environment. Prior to the ABPI, Jennifer worked on the UK’s Independent Review of the Mental Health Act, where she coordinated evidence generation and led the workstream on person-centred care. Jennifer has a PhD in Medical Science (Oncology) from the University of Cambridge.
Founder & Executive Director, The Synergist and CEO, Patient-Focused Medicines Development (PFMD.org).
The Synergist is a collaboration platform incubator that brings key players together with the express aim of solving significant societal problems through collective action. Under Nicholas’ leadership, The Synergist acts as a backbone, providing vision, strategy, stakeholder alignment and execution on multiple global, multi-stakeholder programs.
He is the Executive Director of Patient-Focused Medicines Development, a global collaborative platform dedicated to stimulating innovation in medicine development through systematic engagement with patients.
Nicholas Brooke is an economist by training and was previously Chief Executive Officer of an award-winning digital agency, providing cutting-edge digital strategy to global corporations across multiple sectors.
Working with key players from across the public–private spectrum, The Synergist currently manages several collective programs including Motherhood Collective Impact, From Testing to Targeted Treatment, Patient-Focused Medicines Development and Safe Motherhood Week.
Associate Director Patient Engagement & Experience, PAH NHS
Shahid Sardar, MSc (UCL), MCMI, is Associate director for patient engagement and experience at an acute trust in the East of England and trust network vice chair on race.
He applies the ideas of educational psychology and organisational development to enable relationship centred care.
He has experience of projects delivered in support of the 2012 Olympic legacy working with Pepsi Co, premier league football club, West Ham UFC and Tate and Lyle while working in public health in east London, to make patient centred practice a reality.
In his current role he has trained over 350 doctors, nurses and associated health professionals in patient experience concepts and group facilitation skills in six months to enable front line improvement and developed end of life care improvement projects supporting over 2900 families through the pandemic. A student of Dr Elke Loeffler, he has published articles and blogs on his experiences of patient-centred practice in healthcare as well as case studies, many of which have led to awards and recognition by the BMJ, CapGemini, HSJ, Evening Standard and King’s Fund. Most recently the group set up by Shahid was the first to be awarded the Queens Award for Voluntary Service, equivalent to the MBE for voluntary groups.
Patient and Public Involvement and Engagement Lead, The Royal Marsden NHS Foundation Trust
A passionate, energetic and adaptable patient, public and community involvement and engagement professional and a skilled people-centric researcher/project manager. With substantive experience of steering and chairing leadership teams and bringing co-design and co-production change with patients/service users/public. With a track record of qualitative and mixed research methods and stakeholder networking and influencing. With expertise on:
With lengthy research background of patient experience, health services research and evaluation (25 years), and partnership working with patients, community and public in research (13 years). Led inter-professional and collaborative research groups. Gained valuable experience of cross-national research through PhD work on ‘Patient empowerment in England and Greece: cross-national settings, organisational implementation, systems and cultures’. Developed, delivered and offered consultancy on patient and public involvement and engagement strategies; designed and delivered public involvement & engagement and qualitative research methods teaching and training for undergraduates, postgraduates, professionals, patients and the public. Influenced research leadership and shaped organisational culture and systems towards effective patient involvement and engagement in academia, local London NHS and organisational networks and national programmes, i.e. the 100,000 Genomes Programme. Markella feels passionate and is committed to supporting and empowering patients and the public in many different ways and levels.
Prof Tony Bovaird
Chief Executive, Governance International
Tony Bovaird is Chief Executive of the non-profit organization Governance International, one of Europe’s leading research and advisory bodies on user and community co-production, and Emeritus Professor of Public Management and Policy, University of Birmingham. He has carried out projects on co-production in recent years for the EU, Cabinet Office, MHCLG, Scottish Government, Welsh Government, ESRC and many local authorities, health agencies and third sector organisations.
He has directed over thirty programmes on strategic commissioning for public sector organisations in the UK over recent years, and carried out a review of commissioning across government for the National Audit Office. He is currently running the Leadership Development Programme for Elected Members in Northern Ireland and is supporting Birmingham City Council in its transformation of education, health and care programmes for children with Special Education Needs or Disabilities. He is co-editor (with Elke Loeffler) of the Palgrave Handbook of Co-production of Public Services and Outcomes (Palgrave, 2021), with over 50 of the world’s leading authors on co-production, and co-author (again with Elke) of the best-selling international text book Public Management and Governance (Routledge, 3rd edition, 2016).
Co-Founder & CEO, Realise Advocacy
Josie is the Director of JG Zebra Consulting which provides independent consultancy services with a focus on rare diseases and innovative technologies. She is Co-founder and CEO of Realise Advocacy which supports patient advocacy groups to maximise their impact in HTA and access.
Her current projects include providing strategic market access, policy and stakeholder engagement advice, and support to pharmaceutical companies, trade bodies, and patient advocacy groups. She is the Strategic Director for Duchenne UK’s Project HERCULES, an award-winning international multi-stakeholder collaboration developing evidence and tools to support Health Technology Assessments (HTAs) for new treatments for Duchenne Muscular Dystrophy.
Josie has extensive experience in rare diseases and led the establishment of the Highly Specialised Technologies programme at NICE, the National Institute for Health and Care Excellence in the UK which carries out Health Technology Assessments of treatments for very rare diseases.
Co-Founder & CEO, Realise Advocacy, Trustee, Medics 4 Rare Diseases
Lindsay is the former CEO of MSUK where she served for 6 years and is a trustee at Medics 4 Rare Diseases. Lindsay also served as NHS England Metabolic Clinical Reference Group Patient and Public Voice member for over 4 years. During her time working in rare diseases, she has developed knowledge of the challenges that all stakeholders face in participating in NICE and NHS England access processes for new treatments.
Lindsay has become a strong advocate for supporting patient groups in access and has seen first-hand that well-supported patient advocates can have an impact on decision-making.
Thierry Escudier : Leader in Clinical Research, with more than 30 years experience in Corporate R&D organisations (starting as a monitor in Rhône-Poulenc Rorer, then through different positions at Pierre Fabre up to Head of Clinical Development). He has recently founded, DCRIPT, an independent consultancy company to help all the stakeholders ( pharma sponsors, CRO, vendors) to move towards digital innovation and decentralised clinical trials to increase and enhance patient engagement in the clinical phase setting: this will impact positively the medicinal product lifecycle.
Public Affairs Director, Kyowa Kirin
Victoria Hayes is currently Director, Public Affairs for the Northern Cluster (UK, Ireland, Nordics, and Baltics) at Kyowa Kirin, a Japan-based global specialty pharmaceutical company. She covers all things government affairs, policy, patient advocacy, and external communications.
In the last 18 months, she has built a Public Affairs function at cluster-level that spans government affairs, policy, patient advocacy, and external communications. This has included working with patient organisations on disease awareness, access policy and patient engagement projects as well as leading on corporate affairs initiatives.
Prior to joining Kyowa Kirin, Vicky headed up the Association of British Pharmaceutical Industry’s Office of the Chief Scientific Officer, with a focus on a science and innovation policy.
She has over fifteen years experience in public relations at large, including government affairs, advocacy, and external communications. Franco-British, Vicky has worked both in agency setting and in-house on cross-functional, multi-stakeholder programmes both in and outside of the healthcare sector.
She began her career working for PR agencies, advising international organisations on their public affairs strategies. Vicky then joined GSK France where she led on government affairs, public policy, patient advocacy, and corporate responsibility strategies, spending time in the UK with the global team to coordinate the European patient engagement activities. From 2016 to 2019, Vicky was responsible for Sanofi UK’s primary care and biosimilars public affairs strategy.
Vicky read Public Policy & Administration at LSE, European Studies at La Sorbonne-Nouvelle and Communication and Journalism at Le Celsa (Sorbonne). She is a Trustee of Fertility Network UK and a Freeman of the Company of Communicators.
Head of Patient Advocacy and Public Affairs, Europe, Travere Therapeutics Ltd
Jennifer’s passion lies in being involved with people living with chronic illnesses and facilitating useful interactions. She is energised by opportunities to interact appropriately with patient organisations and communities as well as healthcare professionals, to better understand peoples’ hopes and fears while exploring opportunities to collaborate and partner in the best interests of those most impacted by their health conditions. Jennifer has worked in Pharma, both in-house and in consultancy in a variety of roles, giving her a broad perspective of healthcare. Latterly she has developed a special interest in rare diseases where her mantra has become to never underestimate the importance of listening to, and hearing from, people who experience their disease every day, along with their caregivers and health providers.
CEO, Egality Health, Chair Of The Board Of Trustees, Social Action for Health
Annette is CEO / Founder of Egality, a start-up connecting culturally diverse communities with health research and clinical trials. Annette was previously a policy and public affairs consultant where she worked with global pharmaceutical companies to improve health systems. Alongside this she was Chair of the Board for the Social Action for Health charity, a grass-roots organisation empowering people and communities to live healthier lives in north east London. Annette founded Egality to combine her experience in both roles. She is passionate about connecting those most impacted by health inequalities with the health research and life science industry, to improve research and drug discovery.
Researcher & Lecturer, Meaningful and Sustainable Patient Engagement, Athena Institute
Sevgi Fruytier is Researcher and Lecturer Meaningful and Sustainable Patient Engagement at the Athena Institute. She works at the interface of life sciences and society; studying, shaping and teaching the social processes of (bio)medical knowledge creation and valorisation.
She is committed to enhancing the quality and efficiency of (bio)medical innovation through action-oriented dialogue between researchers, developers, patients and society. She is a passionate advocate for integrating and embedding patients’ experiential knowledge in innovations to ensure that our state-of-the-art medicines and technologies meet patients’ unmet needs. In her day-to-day work, she guides multi-stakeholder collaborations to connect and align different perspectives, specifically focusing on instigating mutual learning. She contributed to the PARADIGM initiative, were she co-developed tools for monitoring and evaluating patient engagement.
Sevgi holds a Master in Biomedical Science from Leiden University and a Master in Global Health from Maastricht University.
David Edward Rose
Ultra-Rare Disease Speaker (1 in 300 million), BD & Sales, Rare Revolution Magazine
David is an accomplished public speaker, delivering talks on his ultra-rare disease, Occipital Horn Syndrome. David talks about all areas of what it’s like living with an ultra-rare disease, both medically and in general life. Occipital Horn Syndrome is ultra-rare, David often talks about the isolation and what it’s like for those living with an ultra-rare disease with no community set up.
Alongside his speaking engagements, he works in business development for Rare Revolution Magazine – a rare disease digital magazine based in the UK. He is also a volunteer ambassador for the famous children’s hospital – Great Ormond Street Hospital – where he spent a lot of time as a child and teenager.
Business Development and Marketing Manager (commercial) NIHR Clinical Research Network (CRN)
Theo Christie is a Business Development Manager (Commercial) for the NIHR Clinical Research Network (CRN). Theo facilitates key discussions between industry and the Clinical Research Network and is a point of contact for the life sciences companies engaging with the Clinical Research Network. Theo is able to provide advice to companies on how they are able to tap into the Clinical Research Network study support services to ensure clinical studies are set up efficiently and recruit to time and target.
CEO and co-founder, COUCH Health
Ash Rishi is founder and CEO of COUCH Health, a creative health engagement agency that serves to make health research inclusive. Its focus covers a range of solutions, including patient insights and engagement through to recruitment and retention within health research.
Ash has over 15 years of experience in the industry, navigating the diverse needs of big pharma through to smaller biotech companies. With experience that covers the full medicine lifecycle, from pre-clinical to lifecycle management, Ash can interpret the challenges and offer robust solutions that are effective across many different activities, such as medical education, healthcare advertising to market access and beyond.
Ash’s passions lay in working to make research more inclusive and has started programmes such as Demand Diversity, Road to Equality and the Health Equity Academy.
Global Patient Centricity Director, Ipsen
Coming Soon! –