Speaker biographies for Congress

Monday, 29 February 2016

IAPO speakers image

 

Speakers A-D

A list of Congress speakers: A-DE-MO-SV-Z
 



 

Gi-Jong An, IAPO Congress speaker

Gi-Jong An

Representative of the Korea Alliance of Patients' Organizations

Gi-Jong An was born in South Korea in 1970 and studied Law at the Hanyang University of Korea. His wife received a diagnosis of chronic myeloid leukemia in 2001 and he received a diagnosis of thyroid cancer in 2009. He has been working for Korean patients’ rights since 2002 when he was involved in the issue of patients’ access to the ‘Gleevec’ anticancer drug. He is a representative of the Korea Leukemia Patient Group which involves 10,000 members as well as the Korea Alliance of Patients' Organizations, representing 35,000 patients from seven patients’ organizations. Gi-Jong is proactively participating in various public health activities and governances including the National Health Insurance Policy Deliberation committee (a Healthcare-related top decision-making body in Korea), the Korea Medical Dispute Mediation and Arbitration Agency and the Korea Patient Right Ombudsman.

Ofra Balaban

Founder and Chair, CHEN – Patient Fertility Association

CHEN supplies support and information and initiates change in laws regarding egg donation in Israel. Ofra also represents Israel in the international umbrella organizations such as ICSI (International Consumer Support for Infertility) and is a member of the board at AFAM (USA). She is also a deputy board member of Fertility Europe. Ofra was part of the organizing committee of the 3rd congress of IAPO that took place in Budapest in 2008.

IAPO Congress speaker Katherine Beaverson

Katherine Beaverson, MS

Patient Advocacy Lead, Rare Disease Research Unit, Pfizer Inc.

Katherine leads the strategic planning and implementation of collaborations with third party patient advocacy groups in support of Pfizer’s Rare Disease Research Unit’s programmatic areas of priority.  In her role she is external facing, engaging with rare disease patient advocacy groups to integrate their expertise into development plans to drive early drug development programs. She is also internal facing, helping to facilitate alignment and communication among cross-functional colleagues who are committed to advancing Pfizer science and programmes along the rare disease drug development continuum with rare disease patient communities.

Prior to joining Pfizer, Katherine has built or joined patient advocacy teams in several pharmaceutical companies. Katherine is professionally trained as a Genetic Counselor, having spent almost 10 years in academic medicine as a Genetic Counselor at both New York Presbyterian Hospital-Weill Cornell Medical Center and Memorial Sloan-Kettering Cancer Center before entering industry.  She provided genetic counseling services, supported basic and clinical research programs, and coordinated comprehensive care programmes to children, families and individuals with inherited hematologic and ophthalmic conditions.  Katherine received her BA from Swarthmore College and her Masters of Science in Human Genetics from Sarah Lawrence College.

IAPO Congress speaker Tamás Bereczky

Tamás Bereczky

​Communications Advisor, the European AIDS Treatment Group

Tamás Bereczky currently works as the communications advisor of the European AIDS Treatment Group, the largest European network of individuals living with HIV. He served as a member of the board of directors of the EATG for almost 4 years, and also served as the co-chair of the European Commission’s Civil Society Forum on HIV/AIDS. Originally a linguist (ELTE University of Budapest) and psychologist (Open University), Tamás is set to defend his PhD based on research into the significance and perspectives of patient organizations in Europe early 2016. He also works as an advisor to UNAIDS and ECDC in matters concerning HIV, HCV, men having sex with men, drug use, and health policy. He is involved in the European Patients’ Academy for Therapeutic Innovation as an editor, content producer, and trainer. Tamás is father to an adult daughter and lives with a mischievous cat in Budapest, Hungary.
 

IAPO Congress speaker Nathalie Bere

Nathalie Bere

European Medicines Agency (EMA)

Nathalie has been working at the EMA in London for over 18 years. She has a first degree in Psychology with a Master in Public Health and is currently responsible for the interaction and involvement of patients and consumers at the EMA. Since 2009, Nathalie’s role has been dedicated to supporting the Agency’s engagement with patients and consumers via a large network of European patient and consumer organisations. This includes the management of the Agency’s Patients and Consumers Working Party (PCWP).  Her work involves not only daily interaction with patients, but also developing and monitoring the scope of their involvement within the various Agency activities, and ensuring that their voice can be heard throughout the lifecycle of a medicines’ evaluation, wherever it may be of benefit.

The role of patients in the EMA has grown significantly and a mutually beneficial relationship has developed over the years. Patients are now an integral part of the Agency’s work; they are involved in a wide range of EMA activities beginning early in the medicines development stage, lasting through the evaluation phase, and continuing once it is authorised.  Nathalie is committed to further strengthening this involvement.

IAPO speaker Jolanta Bilinska

Jolanta Bilińska

​Chair of IAPO Governing Board

Jolanta currently serves as Chair of the IAPO Governing Board.

IAPO Congress speaker Krystal Boyea
 

Krystal Boyea

Krystal Boyea has spent the last four years educating, motivating and inspiring audiences with featured presence on panels and stages around the world. As a young adult living with type 1 diabetes, Krystal has become a globally recognized Patient Advocate and Spokesperson for Diabetes and Chronic Non-Communicable Diseases. She has spoken to audiences from stages at the United Nations General Assembly side events, Medtronic Global Heroes 10th Anniversary weekend, TEDx, the World Diabetes Congress, University of the West Indies Success Women’s Showcase, the Global NCD Alliance Forum, Commencement Ceremonies and more.

In addition to being a speaker, Krystal was the Regional Coordinator for the International Diabetes Federation for the North America and Caribbean Region and the Vice President of the Young Leaders in Diabetes Programme of the International Diabetes Federation. She is the first patient to sit on the Barbados Diabetes Research and Education Task Force in the Ministry of Health.

Krystal is a 2014 Bakken Invitation Honoree presented to her by Medtronic Philanthropy, a 2013 Political Leaders Awardee issued by the Barbados Labour Party, an Arnott Cato Public Health Award Recipient and in 2013 she climbed Mount Kilimanjaro with Sanofi Diabetes to raise awareness.

IAPO Congress speaker Peter Boyle

Peter Boyle

International Prevention Research Institute

Peter Boyle was born in Glasgow, Scotland, and graduated BSc, PhD and DSc (Med) from the University of Glasgow, Faculty of Medicine. He is a Fellow of the Royal Society of Edinburgh, Fellow of the Royal College of Physicians and Surgeons of Glasgow, Fellow of the Royal College of Physicians of Edinburgh, Fellow of the Faculty of Public Health and Fellow of the Academy of Medical Science. He was elected Honorary Member of the Academy of Science of Hungary and a Member of the European Cancer Academy. He was awarded the Knight’s Cross of Order of Merit of Republic of Poland for services to Public Health (2000) and has been awarded with Honorary Membership of several scientific societies and holds Honorary Professorships at several prestigious Universities. In 2013 he was appointed as Professor at Strathclyde University. He has contributed to the fields of tobacco and lung cancer, breast cancer and prostate cancer.

IAPO Congress speaker Dr Andy Bushell

Dr. Andy Bushell, PhD

Global Program Head Galvus Group, Novartis

Andy has over 30 years of experience covering the entire process of discovery, development, marketing and sales for medicines worldwide and external speaker on Innovation and non-communicable disease. He has significant previous line management, fiscal and project accountabilities, including Worldwide approvals and launches for Zomig (zolmitriptan) with Zeneca and for Relpax (eletriptan) with Pfizer, Leadership of the Full Development Project Management Function for Pfizer in Groton/New London, USA, Head of Innovation and Global R&D Operations for Novartis Consumer Health, Lead for Development of Diovan, Exforge and Lotrel. He is the founder of challenge-based ideation in Novartis (IdeaLab/IdeaPharm) and is leading for Novartis in several initiatives in the non-communicable disease area (Chronic Disease Foundation Initiative with IBM and Vodafone, “Be Healthy Be Mobile” initiative with WHO, Guidance for policy makers in Diabetes white paper with World Innovation Summit for Health/Qatar Foundation).

IAPO Congress speaker Gertrude Buttigieg

Gertrude Buttigieg

Honorary Secretary, Malta Health Network

Gertrude is a Speech and Language pathologist and she holds a Masters degree in Health Services Management. On a voluntary basis she has served on the committee of the Association of Speech Language Pathologists since 1995. In 2007 she was elected Honorary Secretary of the Malta Health Network and serves on the Malta Council for Economic and Social Development, representing the sectors of Health and Elderly. Since 2014 Gertrude has been serving as a council member on the Malta Council for the Voluntary Sector. Ms Buttigieg has participated in several conferences sharing her professional background and experience in the voluntary sector.

IAPO Congress speaker Ricardo Cabral

Ricardo Cabral

EUSAUDE 

Ricardo Cabral has been a mentor and manager of many projects in health IT for more than 15 years, focused on primary care and patient management. He is enrolled in the conceptualization of strategies and projects regarding patient empowerment and engagement through Education and Personal Habits Change for better health. The current main project is EUSAUDE, with more than 4 million visitors in the past 3 years and more than 40,000 women enrolled on a maternal health project. He holds a Masters Degree on Internal Medicine and community health, specialising in Gynecology and obstetrics.

IAPO Congress speaker Anne Charlet

Anne Charlet

Lupus Europe’s Vice-Chair and Lupus France Board Member

When Anne’s daughter was diagnosed with Lupus at the early age of 16, it was a natural step to get involved, which led her to these patient representative organizations. Anne is a trilingual American, with a deep interest in the subject of cultural intelligence. She worked in the USA, UK and Germany before settling with her family in France, where she now provides Global Marketing support for Europe’s largest IT service provider. One of her main drives is to achieve better recognition of Lupus throughout the world, and shorter time to diagnosis for Lupus patients until we can one day live in a world without Lupus. 

IAPO Congress speaker Rubby Chawla

Rubby Chawla

Founder and President, Indian Patients Society for Primary Immunodeficiency (IPSPI)

Rubby, along with her husband’s support, formed IPSPI in 2004. She has organized various National and International conferences and facilitated workshops on PID in many different institutions. She is the  Core Committee founder member of the Indian Alliance of Patients Group (IAPG) and Member of Team India Orphan Diseases/Drugs (TIODD), Pharmexcil and the Indian Pharmacological Society. She was selected for representing South East Asia by IAPO at the SEARO WHO meeting at Dili, Timor-Leste.

She holds a Post Graduate degree in Commerce and further continued as Professor of Commerce for thirteen years. She did her Post Graduate Diploma in Public Health Services Management, PHFI and has contributed an article in Pharmaceuticals Policy And Law (Volume 10, 2008) by Prof. J. L. Valverde & D. Watters on Primary immunodeficiencies in India: The patient perspective.

IAPO Congress speaker Carolina Cohen

Carolina Cohen

Institutional Director, ABRALE

Carolina Cohen is the Institutional Director of ABRALE (Brazilian Lymphoma and Leukemia Society) and ABRASTA (Brazilian Association of Thalassemia) Carolina graduated in Social Communication and holds a postgraduate degree in Graphic Design and in Marketing. 
She is a patient of mastocytosis, a rare blood disorder. Carolina is actively involved in negotiations with the government to improve the Brazilian health policies and also mobilizes the private sector partners to provide the best treatment in the country for patients with blood disorders.

IAPO Congress speaker Penney Cowan

Penney Cowan

IAPO Governing Board Member

Penney current serves as a Governing Board Member for IAPO.

IAPO Congress speaker Migdalia Denis

Migdalia Denis

Founder and President, the Venezuelan Society of Pulmonary Hypertension and of the Pulmonary Hypertension Latin Society

Migdalia has been a Pulmonary Hypertension patient since the year 2000. She is a member of the Paraguayan Federation of Pulmonary Hypertension, writer and co-writer of many articles published in science magazines about the advances that the Pulmonary Hypertension has had in Latin America, and founder and leader of the support group of patients in South Florida. Her responsibilities as a Coordinator of the Pulmonary Hypertension Latin Society cover the creation, communication and implementation of the vision and mission of the organization through the development and the execution of strategies of the society. She represents the PHLS in activities such as: Medical Associations, Scientific Congress and International Symposiums among other similar activities by being an active participant in coaching and talking about the importance of patients in Latin America.

 


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Speakers E to M

 

IAPO Congress speaker Bruce Eshaya-Chauvin

Dr Bruce Eshaya-Chauvin

Medical Advisor to the Health Care in Danger Project

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.

IAPO Congress speaker Marco Espildora H.

Marco Espíldora H.

Director, CáncerVida Foundation

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.

IAPO Congress speaker Lars Ettarp

Lars Ettarp

President, International Federation of Psoriasis Associations (IFPA)

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.

IAPO Congress speaker Hussain Jafri

Hussain Jafri

Secretary General, Council for Alzheimer's Pakistan

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).

IAPO Congress speaker Christine Janus

Christine Janus

CEO, International Alliance of Dermatology Patient Organizations (IADPO)

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

​IAPO Governing Board Member

Robert currently serves as a Governing Board Member for IAPO.

IAPO Congress speaker Joan Jordan

Joan Jordan

EUPATI Trainee, MS Ireland

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!"

IAPO Congress speaker Kate Knobil

Kate Knobil, MD

Chief Medical Officer, Pharma, GlaxoSmithKline

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. 

IAPO Congress speaker Kathy Kovacs Burns

Katharina (Kathy) Kovacs Burns

Board Director, Best Medicines Coalition of Canada

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.

IAPO Congress speaker Jane Meijlink

Jane Meijlink

Founder and Chair, International Painful Bladder Foundation

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.

IAPO Congress speaker Bejon Misra

Bejon Kumar Misra

Founder, Consumer Online Foundation, New Delhi, INDIA

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.

IAPO Congress speaker Flora Kerstin Morrison

Kerstin Morrison

European Patient Ambassador Programme

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. 

 

 

Speakers O to S

 

IAPO Congress speaker Anders Olauson

Anders Olauson

Chairman, Agrenska Centre

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. 

IAPO Congress speaker Dr Victoria Pinkney-Atkinson

Dr Victoria Pinkney-Atkinson

Patient Health Alliance of Non-Governmental Organisations

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.

IAPO Congress speaker Felicity Pocklington

Felicity Pocklington

Consultant, Patients for Patient Safety Programme, Service Delivery and Safety Department, World Health Organization

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.

IAPO Congress speaker Nittita Prasopa-Plaizier

Nittita Prasopa-Plaizier

Programme Manager, Patients for Patient Safety (PFPS), Technical Officer for Advocacy and Civil Society Engagement, Department of Service Delivery and Safety, World Health Organization

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).

IAPO Congress speaker Flora Raffai

Flóra Raffai

Executive Director, Findacure

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.

IAPO Congress speaker Tessa Richards

Dr Tessa Richards

Senior Editor, British Medical Journal

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.

IAPO Congress speaker Eva Maria Ruiz de Castilla

Dr Eva Maria Ruiz de Castilla

Executive Director, ESPERANTRA

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.

IAPO Congress speaker Nicolas Sireau

Dr Nicolas Sireau

Chairman, AKU Society

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.  

IAPO Congress speaker Sylvie St-Laurent

Sylvie St-Laurent

Senior Director, International  Public Affairs. Pfizer Inc.

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.  

 


 

Speakers V to Z

 

Mary Lynn Van Poelgeest-Pomfret

Mary Lynne Van Poelgeest-Pomfret

President and founder member, World Federation for Incontinent Patients  (WFIP)

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.

IAPO Congress speaker Hilde Vanaken

Hilde Vanaken

R&D Operations Innovation Director, Transcelerate eConsent Workstream Lead, Janssen

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.

IAPO Congress speaker Joshua Wamboga

Joshua Wamboga

IAPO Governing Board Member

Joshua currently serves as a Governing Board Member for IAPO.

IAPO Congress speaker Matthias Wienold

Matthias Wienold

IAPO Governing Board Member

Matthias currently serves as a Governing Board Member for IAPO.

IAPO Congress Durhane Wong-Rieger

Durhane Wong-Rieger

​IAPO Governing Board Member

Durhane currently serves as a Governing Board Member for IAPO.

 

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