Speaker biographies for Congress

Dr Bruce Eshaya-Chauvin

Dr Eshaya-Chauvin is a physician with broad experience and expertise in international public health and humanitarian action. Former head of Heath Division of the International Committee of the Red Cross (ICRC) and head of the Health Department of the International Federation of Red Cross and Red Crescent Societies, he is the Medical Advisor to the Health Care in Danger Project. The project aims to make healthcare delivery safer around the world by mobilizing experts to develop practical measures for decision-makers, military, humanitarian organizations and health professionals.

Marco Espíldora H.

Marco is a journalist with extensive experience in management, corporate branding and marketing, team coordination in the development of strategic communications and public relations policies. He has also worked in event production and audiovisual projects for mass audiences in the field of health.

In addition to his work as Director of CáncerVida Foundation since 2012, currently he serves as Head of the Communications Unit of the National Institute of Geriatrics  (ingerchile.cl). He is also co-founder of the Corporation "Action Mayor" (www.accionmayor.cl). He holds a Masters Degree in Strategic Communication at the University Adolfo Ibáñez in 2011, and is currently studying Public Policy at the Universidad Diego Portales.

Lars Ettarp

Lars has had psoriasis since childhood. He is now President of the Swedish National Psoriasis Association, having been a member since the age of 27, and is the retired Director-General of SWEDAC (Swedish Board for Accreditation and Conformity Assessment). He holds a Bachelor of Science in Sociology, University studies in political sciences and statistics.

Hussain Jafri

Secretary General and IAPO Representative of the Council for Alzheimer’s Pakistan, the national association of Alzheimer’s Disease and related dementias. Hussain founded Alzheimer’s Pakistan in 1999 as a result of his experiences as a caregiver for his grandfather with Alzheimer’s Disease. Hussain runs his own tourism company and also works as a consultant in the medical field. He is working as Research Coordinator for University of Leeds, UK and Cambridge University, UK in a collaborative research programme on gene location between Pakistan and the UK, funded by a Wellcome Trust Grant. He is a WHO Patients for Patient Safety Champion (PFPS) and a PFPS representative of Eastern Mediterranean Region (EMRO).

Christine Janus

Christine has been a passionate advocate for patients as the past ED for the Canadian Skin Patients' Alliance (CSPA) and Canadian Association of Psoriasis Patients (CAPP). Christine has led the development of five national award-winning initiatives including two research-based National Report Cards. Recently she created an International Conference for Dermatology Patient Organization leaders (IDPOC.org) and in 2015 an International Alliance for Dermatology Patient Organizations (globalskin.org).

In her past life, Christine has been a management consultant in specialized marketing, business development and design into the Healthcare, Banking, Venture Capital, Real Estate, Pro sports, HR services and University sectors. She has taught University-level Marketing and has engaged in the design of organizations, communications campaigns, marketing research, and training and educational programs.

Robert Johnstone

Robert currently serves as a Governing Board Member for IAPO.

Joan Jordan

Joan has been living with Multiple Sclerosis for over six years. She has accepted her chronic illness and wants to help make life better for the 9,000 Irish people with MS. She is using her experience of over a decade working in IT, participation in a clinical trial, communication skills, EUPATI patient advocate training, her time living abroad and most importantly knowing how it feels to have an illness for which there is currently no cure to help find one. As she says herself, “I don’t want to stand on the side lines and cheer the researchers on. I want to play!"

Kate Knobil, MD

Dr. Kate Knobil was appointed Chief Medical Officer, Pharmaceuticals in November 2015, comprising Global Clinical Safety and Pharmacovigilance, Value Evidence and Outcomes (VEO), and the Medical Groups in the Respiratory and Specialty Franchises, as well as within Classic and Established Products.  Together, these groups work together to understand the current and future needs of patients, clinicians and healthcare systems to generate and communicate evidence that informs on the benefits, risks, and overall value of our medicines.

Previous to this role, Dr. Knobil was SVP,VEO with global accountability for delivering the evidence to support the value of GSK medicines for patients, healthcare providers, and payers. She also had responsibility for the Real World Evidence Strategy for GSK.

Kate is a physician with extensive experience in pharmaceutical development.  She completed her Fellowship in Pulmonary and Critical Care Medicine at the Johns Hopkins Medical School, where she obtained an NIH grant to study the regulation of inflammatory genes after influenza virus infection.  She joined GSK in 1997 to lead clinical development in the US for Respiratory medicines.   International assignments first took her to the UK in 2005 to lead the European Respiratory Clinical Team, and then to China in 2010 to build the late stage clinical development capability across therapy areas. 

Katharina (Kathy) Kovacs Burns

Kathy is a Professor in the School of Public Health, University of Alberta and Senior Manager, Alberta Health Services (Quality Healthcare and Improvement), as well as President of the Health Coalition of Alberta. She researches and advocates with and for patients, their families and the public to be engaged in discussions and decisions to improve health services access and utilization. Her research also involves community organizations, government and health system decision makers, exploring aspects of Patient and Family-Centred Care including measuring patient experiences and outcomes.

Jane Meijlink

Jane is the founder and chair of the voluntary, non-profit International Painful Bladder Foundation (IPBF) for people with Interstitial Cystitis, Bladder Pain Syndrome, Hypersensitive Bladder, Hunner Lesion, Chronic Pelvic Pain and Associated Disorders. She has been a voluntary advocate and representative in this field since 1993. She gives presentations worldwide at international meetings and congresses and has written information for patients and professionals worldwide, including a number of book chapters for medical books. In recent years, she has authored and co-authored several publications in scientific journals.

Bejon Kumar Misra

Bejon is an International Consumer Policy Expert, working from India since 1983 and Founder of the Patient Safety and Access Initiative of India Foundation and Partnership for Safe Medicines (PSM) India Initiative. He is a member of several working groups and expert committees on Patient Safety and Quality of Healthcare Delivery Mechanism in India. He is a recipient of the "Distinguished Alumni Award" by the Faculty of Management Studies, BHU and the “World No-Tobacco Day Award” from the South-East Asia Region of the World Health Organization.

Kerstin Morrison

Kerstin Morrison works for the European Lung Foundation (ELF) as a project co-ordinator for patient training and events. She manages the European Patient Ambassador Programme (EPAP), an online patient training course. She works with a patient advisory group to develop the programme. Kerstin also co-ordinates the European patient organisation network for ELF, and works closely with patient organisations in the different countries. She writes training materials for patients and patient organisations, and organises workshops and information events for patients. She is also involved in the organisation and running of public health awareness campaigns for ELF. 

Anders Olauson

Anders was involved in the founding of the Agrenska Centre in 1989. He served as director until 2004 and since then has been chairman. He is responsible for establishing The Agrenska Virtual International Academy, a research centre for rare disorders. In 2003 The Eesti Agrenska Foundation was inaugurated, and Anders is serving as Chairman of the Council since then. In 2005 Agrenska was appointed member of ECOSOC within United Nations, with “special consultative status”. Anders is particularly concerned with the impact of rare conditions on children and their families. His work involves contact with both national and regional legislative bodies on the subject of rare disorders. He is also in contact with representatives of hospitals, education and labor unions as well as other key players in the field of rare diseases.

Anders is past member of the board of EURORDIS, and was president from 1999 to 2001. He currently represents it as a member of the board of the European Patients’ Forum (EPF). He has been president of EPF since June 2005. Between 2006 and 2012, Anders was a member of the advisory group for Health Research within DG Research. Since 2013/14 Anders is appointed member of the Horizon 2020 Advisory group for Societal Challenge -Configuration 'Health, demographic change and well-being. Anders Olauson received HM The King of Sweden’s Medal for his valuable contributions in the field of disability. Anders was presented with the King’s medal 8th size, with the Seraphim Ribbon at the Royal Palace in Stockholm, the 28th of January 2010. Anders also received the City of Gothenburg’s medal for outstanding service for the city in 2014. 

Dr Victoria Pinkney-Atkinson

Vicki has coexisted with multiple non-communicable diseases (NCDs) for over 60 years. In accordance with African tradition she is actually named after a South African world champion boxer so surprisingly her life journey is to survive NCDs despite near-death experiences helped along by misdiagnosis and maltreatment. She is a nurse with a doctorate, and is living proof that people living with chronic illnesses AND their nurses are empowered by “knowing” about themselves and the illness. Vicki is self-employed, taking on many fulfilling projects in health care related areas. This includes being a founding and managing member of the Patient Health Alliance of Non-Governmental Organisations (a network of 22 patient based organisations) and the South African NCDs Alliance.

Felicity Pocklington

Felicity has a background in Anthropology, International Development, and Public Health. Felicity’s background has mainly focused on different pathways towards effective community engagement strategies, both through NGO work in Australia, Botswana, Ghana, South Africa, and qualitative research in Australia, Israel, South Africa, UK, and at WHO headquarters in Geneva. Felicity currently works in the WHO Patients for Patient Safety (PFPS) programme and the global patient, family and community engagement initiative of the Service Delivery and Safety (SDS) department at WHO headquarters in Geneva. She is assisting in the development of the WHO Global Patient and Family Engagement Framework and is contributing to a range of evidence-based tools, resources and interventions to support the framework.

Nittita Prasopa-Plaizier

Nittita is a programme manager for patient safety and quality improvement and leads the global patient, family and community engagement initiative at the World Health Organization (WHO) Service Delivery and Safety (SDS) department. She leads the portfolio of advocacy and civil society engagement as well as capacity strengthening for engagement and empowerment, focussing on engaging for patient safety, people-centred health services and quality universal health coverage (UHC).

She is a technical lead for the development of the WHO Framework on Patient and Family Engagement. As part of this role, she manages the Patients for Patient Safety (PFPS) programme, which supports a global network of patient advocates. She also serves as a designated technical officer for WHO official relations with ISQua (the International Society for Quality in Health Care) and with IAPO (International Alliance for Patients’ Organizations as well as liaising for SDS involvement with the Prince Mahidol Award Conference (PMAC). Nittita graduated from Mahidol University (Thailand), the University of Sydney (MPH), La Trobe University (MSHc) and is a PhD candidate at La Trobe University (Australia).

Flóra Raffai

Executive Director at Findacure, a UK charity building the rare disease community to drive research and develop treatments. She was the first hire at Findacure, developing the charity’s projects, funding, and community. Flóra organises Findacure’s patient group empowerment programmes, runs scientific community engagement projects, develops the charity strategy, and oversees major funding applications. She also manages other members of staff. Flóra graduated from the London School of Economics and Political Science with a BSc (Hons) in International Relations. She is a founding member of the Cambridge Rare Diseases Network and is Co-Organiser for the Cambridge Chapter of Good for Nothing.

Dr Tessa Richards

Tessa leads the BMJs patient partnership initiative. She trained at Guys Hospital in London and worked in the NHS as a general physician and rheumatologist and subsequently a general practitioner before joining the BMJ editorial staff. In 2001 she took over the BMJ Analysis section and established its Overdiagnosis series, which is part of the BMJs campaign against “Too Much Medicine.” She is a member of the Royal College of Physicians and the Royal College of General Practitioners, a BMJ columnist and blogs regularly on patient perspectives. Past experience at the BMJ includes leading the journals general practice, medical education, clinical reviews, and Analysis sections. She has also written series on medical education, medicine in India, Health Maintenance Organisations and EU affairs. Theme issues she has produced include Partnering with Patients and a series on Patient Centred Care. Interests include patient empowerment, international health and European health policy. Her professional interest in patient partnership has been advanced by her experience as a carer for close family members with rheumatoid arthritis, dementia, and blindness, and living with stage 1V adrenal cancer, pernicious anaemia and hyperparathyroidism.

Dr Eva Maria Ruiz de Castilla

Co-founder and, since 2006, Executive Director of ESPERANTRA, a not-for-profit cancer and chronic disease patient advocacy organization in Lima, Peru. Her work at ESPERANTRA is to improve the quality of life of patients with chronic conditions, to promote health, and to advance the recognition of the rights of patients to achieve access to timely diagnosis, treatment, and follow-up care. She has been instrumental in a number of national initiatives focused on cancer, including the government’s Plan Esperanza launched in 2012 to provide basic cancer care coverage for the poorest and most vulnerable Peruvian.

As a former Board Member of IAPO, Eva Maria has been a global leader in patient-based organizational capacity building and has led various workshops on patient empowerment and networking. Her experience and involvement with building the capacity of civil society organizations focused on cancer in Peru earned her the American Cancer Society’s “Excelencia Latina 2009” Award. In 2011, Eva Maria was named a Global Cancer Ambassador by the American Cancer Society, and was invited by WHO to participate as a civil society representative during the UN High-Level Meeting on non-communicable diseases.

Dr Nicolas Sireau

Chairman of the AKU Society, an international patient group that helps patients with AKU, also known as Black Bone Disease, which affects both his children. He is also co-founder and Chairman of Findacure, a new charity that provides support to emerging patient groups and carries out drug development. He is co-editor of The Patient Group Handbook: A Practical Guide for Research and Drug Development, and is editor of Rare Diseases: Challenges and Opportunities for Social Entrepreneurs.  

Sylvie St-Laurent

Sylvie is responsible for working with governments and stakeholders to improve the policy environment and access to innovative medicines for patients with inflammatory diseases. Sylvie represents Pfizer on Europabio’s Biosimilars Working Group and previously spent four years working for Pfizer’s European Government Affairs/EU Representation office in Brussels. Prior to joining Pfizer in 2002, Sylvie worked for five years as Director of Strategic Communications for the Forest Products Association of Canada and for ten years at Air Canada in various communication and marketing roles.  Sylvie holds a B.A. in Philosophy and an M.A. in Media Studies.  

Mary Lynne Van Poelgeest-Pomfret

WFIP is a not-for-profit federation of national continence patient organizations throughout Europe and beyond, whose mission it is to champion the interests and rights of persons suffering from all forms of incontinence and associated pelvic floor disorders. Lynne is also the current Chair of EPPOSI, Chairperson of the Dutch Interstitial Cystitis Patients’ Association (ICP) and a Board member of MICA (Multinational Interstitial Cystitis Association) and as such she has many dealings with the European rare diseases community (Eurordis).  She is also a member of the Continence Promotion Committee of the International Continence Society. She is a Board member of Epposi, a Brussels-based multi-stakeholder European think tank and a member of the EFGCP Ethics Working Group. 

More recently, she has become a member of the Steering Group of the Medtech - EPF Patients’ Dialogue and is also a member of the EPF Strategic Planning Working Group. She is also very much involved in the EUPATI patient academy programme.  The variety of these and other functions and the experience they have afforded her have given Lynne a great insight into health issues from the various perspectives and she considers the role of the patient advocate increasingly important in the world we live in.

Hilde Vanaken

Hilde has more than 15 years of experience in pharmaceutical companies and Clinical Research Organizations, where she held various leading positions in clinical operations, data management, professional affairs, quality management and strategic business improvement. Prior to clinical research, Hilde worked as a basic research scientist for 6 years. She has a passion for complex or so called mission impossible projects and has a track record of transforming them into success stories.

In her current role at Janssen, she is leading several transformational projects such as eConsent, eLabel/eMeds, eSource, iSTEP (Integrated Smart Trial and Engagement Platform) to modernise Janssen’s clinical trials and improve the experience of patients and investigators. As Transcelerate eConsent workstream lead, Hilde also drives cross-industry the eConsent project with the patient as key stakeholder. Hilde holds a degree in Engineering in Chemical and Agricultural Sciences, a Master in Environmental Sciences and a PhD in Medical Sciences, all from the Catholic University of Leuven in Belgium.

Joshua Wamboga

Joshua currently serves as a Governing Board Member for IAPO.

Matthias Wienold

Matthias currently serves as a Governing Board Member for IAPO.

Durhane Wong-Rieger

Durhane currently serves as a Governing Board Member for IAPO.