Speaker biographies for Congress 2018

Thursday, 22 March 2018



A list of Congress speakers: A-D, E-J, K-M, N-Z

Global Patients Congress
How to attend


Amber Huett-Garcia

Immediate Past-Chairwomen of the Obesity Action Coalition (OAC) and Director of Development at Teach for America - Memphis

A long-time member and advocate, Amber chaired the national Your Weight Matters Convention for three years and currently chairs their Convention Scholarship Program, which she developed to increase access to the convention’s strong weight and health education. She is also the 2014 OAC Chairman’s Award recipient. Amber is a surgical weight loss patient and has battled the disease of obesity since early childhood and currently maintains over a 130 pound weight loss. In her advocacy of health care access and quality education, Amber wanted to do more than lobby and work within organizations. She launched a campaign and is a Democratic candidate for the Tennessee House of Representatives, District 86. Amber holds a Master’s of Public Administration from the University of Illinois - Springfield and is a graduate of the Bradley University, Peoria, Ill. She is the Director of Development with Teach for America - Memphis and lives in Memphis, Tennessee with her husband Matthew and daughter Parker.

Amy Price, PhD

Patient Editor for Research and Evaluation at The BMJ

Her educational affiliation is the University of Oxford. Amy’s background in international relief work, clinical neurocognitive rehabilitation, service on the boards of multiple patient organizations, and as a trauma survivor has equipped her with the flexible mindset to relate to all stakeholders and cultures. Amy’s experience and training have shown her that shared knowledge, interdisciplinary collaboration, and evidence-based research can shape the future. Her goal is to mentor others to build clear channels to propel evidence into practice by supplying the public, and those in low resource areas, with tools to make evidence-based healthcare choices.

Andrea C. Furia-Helms, M.P.H.

Acting Director of the Patient Affairs Staff in the Office of Medical Products and Tobacco, Office of the Commissioner at the U.S. Food and Drug Administration (FDA)

She is working with the FDA centers/offices to support the FDA’s ongoing patient engagement efforts and is coordinating cross-cutting patient engagement activities to ensure patients, caregivers, and advocates have opportunities to share their perspectives in the FDA regulatory meetings.  Ms. Furia-Helms spent the past ten years in the FDA’s Office of Health and Constituent Affairs where she directed the FDA Patient Representative Program and coordinated patient engagement activities. Prior to FDA, Ms. Furia-Helms was Director of the Back to Sleep (now Safe to Sleep) campaign, a public-private partnership to educate communities on Sudden Infant Death Syndrome (SIDS), at the National Institutes of Health.  She developed SIDS outreach initiatives for African American, American Indian and Latino communities. Ms. Furia-Helms has a B.A. in psychology from Framingham State University, a B.S. degree in community health education from University of Maryland, and a Master of Public Health degree from The George Washington University.

Andrew Spiegel, Esquire

IAPO Board Member & Co-Founder and Executive Director of the Global Colon Cancer Association (GCCA)

Andrew Spiegel has nearly two decades of experience in the patient advocacy arena. Spiegel co-founded the Colon Cancer Alliance (CCA), now the leading US based national patient advocacy organization dedicated to colon cancer. Mr. Spiegel, an attorney, besides being a co-founder of the organization and longtime board member of the Alliance became CEO in January of 2008 and he ran the CCA for nearly 5 years, before undertaking his next venture, the Global Colon Cancer Association. This organization is an international community of colon cancer patient advocacy organizations and stakeholders dedicated to end the worldwide suffering of the 3rd leading cause of cancer deaths. In addition to his work in the colon cancer community, Spiegel is an active advocate for healthcare policies both in the US and now worldwide. He is a co-founder and currently serves on the steering committee of the Alliance for Safe Biologic Medicines (ASBM). He is on the Board of Directors, and in December 2014 was elected Chair of the Digestive Disease National Coalition (DDNC), a founding member of the Coalition to Increase Clinical Trial Participation, and in May of 2016 he was elected to the Board of Directors of the International Alliance of Patients’ Organizations (IAPO) where he chairs the fundraising committee. Spiegel is a 1986 graduate of Temple University in Philadelphia where he earned a Bachelor’s degree in Political Science with minors in English and Philosophy. He is a 1989 graduate of the Widener University School of Law. After working for a Philadelphia litigation firm, Spiegel opened his own law firm in 1995.

Annekatrin Krause

Global Patient Engagement Manager Pharma at Novartis

In her current role in the Global Pharma Patient Advocacy team, Annekatrin is focusing on activities addressing general themes of the patient community therefore working closely with the country pharma organization as well with various functions within Novartis. Since joining Novartis in 2010 in the Medical Affairs team, Annekatrin is committed to work together with the patient community to improve outcomes for patients. Annekatrin holds a Diploma in Biology from the Technical University Darmstadt, Germany and a PhD from the University of Heidelberg & German Cancer Research Center, Heidelberg, Germany.

Antonio Arce

Regional Corporate Affairs Head for Latin America & Canada at Novartis

Antonio Arce is an international business executive with more than 15 years of experience accomplishing outstanding achievements in key multinational companies. He has worked with an extensive range of markets and cultures such as USA, the European Union, Singapore, Peru and most recently Mexico. Antonio has a solid background in obtaining results through a focus on win-win collaborative initiatives where he always puts his partner at the forefront of any negotiation. He has also focused on major improvements in productivity and cost-effectiveness in his regional positions and in the operations of the countries of which he oversaw. This successful track record makes him a key contributor for the Novartis Group. He is currently responsible for the Regional Corporate Affairs and Communications strategies for Novartis Pharmaceuticals in Latin America and Canada; he oversees the corporate external engagement of the company with other economic, political and social agents that are active in driving better health outcomes. Previous to his current role, Antonio was the Corporate Affairs Head for Novartis Mexico. Antonio joined Novartis in 2009 in the area of Supply Chain and Logistics for Latin America. He holds a Bachelor’s Degree in Economics, Marketing and Management Information Systems from Florida International University, and holds a certificate in International Trade and Logistics from California State University.

Camilla Krogh Lauritzen

Chief Patient Officer for Rare Diseases at LEO Pharma

Camilla is a partnership strategist with 18 years experience in supporting research alliances, patient organizations as well as Fortune 100 listed pharma companies building sustained success and leadership through transformative partnerships. Along this, she is co-founder of the world's first Centre for Translational Breast Cancer Research (2007), and is the founder of the Patient Relations function in three pharma companies: Abbott (2009), AbbVie (2011) and Novo Nordisk (2015). Before joining pharma, she worked for the Danish Cancer Society; the biggest patient organization in Denmark. She joined LEO 1 May 2018 as Chief Patient Officer focusing on patient partnerships in the rare skin disease area. Camila has Master degrees in molecular biology (MSc), corporate communication (MCC) and business administration (MMBA), respectively.

Christine Janus

CEO of the International Alliance of Dermatology Patient Organizations (IADPO)

Christine has a proven track record as a strong patient advocate and was instrumental in founding IADPO, where she holds the CEO role since 2015, and conceiving of the organization’s ground-breaking Global Research on the Impact of Dermatological Diseases (GRIDD) project. It has long been Christine’s view that people living with dermatological conditions around the world deserve much better access to care and treatment, and that by working together with like-minded organizations, this goal is achievable. Christine served as Executive Director and then CEO of the Canadian Skin Patient Alliance (CSPA), 2007-2015. In those roles, Christine built the CSPA into a vibrant and effective voice for skin patients and led the development of five national award-winning initiatives including Skin Deep, A Report Card on Access to Dermatological Care and Treatment in Canada. In 2013, Christine helped the CSPA launch a subsidiary organization specifically to serve psoriasis patients, called the Canadian Association of Psoriasis Patients (CAPP) and followed up by releasing the Psoriasis Report to shine a light on the access issues for the millions of Canadians living with psoriasis. Christine’s experience and expertise also include working with organizational start-ups, specialized marketing, business development and management consulting services, as well as training development to the health care, banking, venture capital, real estate, sporting management, HR services and University sectors. She has also taught marketing at the university level. Christine was named to the first Patient Commando list of Women Changing Healthcare in 2013.

Danjuma K. Adda

Patient Advocate living with Hepatitis B

Danjuma is the founder of Chagro-Care Trust (CCT) Taraba (voting member of World Hepatitis Alliance UK) and Center for Initiative and Development (CFID) Taraba (member of IAPO), both patient-led groups working to improve access to life-saving therapy to patients in Nigeria. He is also the National Coordinator of the Civil Society Network on Viral Hepatitis, in Nigeria, an organization he co-founded with other advocates to support hepatitis related advocacy, coordination and mobilization in Nigeria. He works with community-based charity organizations to raise awareness on viral hepatitis, HIV/AIDS, engage policy makers and industry partners to improve access to diagnostics and treatment for patients.He seeks to empower patients, amplify their voice and push for their engagement in all matters that affects them in ways such as free HbsAg and Anti-HCV tests, and HBV vaccine to people in Taraba state. To date, over 50,000 have benefitted from our free health services, in collaboration with other key stakeholders in health. 

Durhane Wong-Reiger 

Chair of Rare Disease International 

Durhhane is the past-chair of the International Alliance of Patient Organizations, member of the Editorial Board of The Patient- Patient-Centred Outcomes Research and member of Health Technology Assessment International Patient /Citizen Involvement Interest Group.  In Canada, she is President & CEO of the Canadian Organization for Rare Disorders (the umbrella organization of patients and patient groups), Chair of the Consumer Advocare Network (a national network for patient engagement in healthcare policy and advocacy), President & CEO of the Institute for Optimizing Health Outcomes (providing training and direct service on health coaching and patient self-management) and Chair of FH Canada Patient Network.  She is a certified Health Coach and licensed T-Trainer with the Stanford-based Living A Healthy Life with Chronic Conditions. Dr. Wong-Rieger has served on numerous health policy advisory committees and panels and is a member of the Working Group for Ontario’s Rare Disease Strategy and member of the Patient Liaison Forum for the Canadian Drugs and Technologies in Health. Durhane has a PhD in psychology from McGill University and was professor at the University of Windsor, Canada.  She is a trainer and frequent lecturer and author of three books and many articles.

Dr. Erik Kreyberg Normann

Immediate Past President of the International Hospital Federation (IHF) & President of the Norwegian Hospital and Health Service Association

At the IHF, Dr. Normann was President from 2015 to 2017 and President Designate from 2013 to 2015. He is a Paediatrician but since 1995 mainly been employed in different management positions. He has been the CEO of several hospitals in or nearby Oslo, like Ullevaal University Hospital, Buskerud Hospital and Akershus University Hospital. In the last one he was leading the process in preparing and moving the hospital from an old inefficient building into a large, new hypermodern hospital. He was also the CEO of Oslo Municipal Child and Family Services; the child protection service, child and adolescent psychiatry and family services in Oslo. He has been the Director of the Department of Hospital Services in the Norwegian Directorate of Health, the Secretary-General of the Norwegian Air Ambulance Foundation and CEO of the largest private diagnostic imaging company in Norway, Curato Ltd. Dr. Normann has been the President of the UNICEF Norway, the Nordic Society on Child Abuse and Neglect, the local Rotary Club and for 13 years President of the Board of a local school (one of the largest schools in Norway). He has also for many years been a member of the Executive Committee of European Association of Hospital Managers (EAHM). While Dr. Normann worked as a clinician, he had different interests, and published several papers in national and international publications and books in the areas of neonatology, endocrinology, infectious diseases and social paediatrics.

Fadwa Sibai

Deputy Director of Policy, Public Affairs and Stakeholder Advocacy for Americas region at Bayer Consumer Health

In her previous role within Bayer, Fadwa was head of Policy and Public Affairs for the region Europe for Bayer’s pharmaceutical division. Prior to joining Bayer, Fadwa worked for the trade association EFPIA (European Federation of Pharmaceutical Industries and Associations), being in charge of advocacy and public affairs and of relations with European institutions.

Geoffroy Bessaud

Global Head of Anti-Counterfeiting Coordination at Sanofi

Geoffroy Bessaud started his career as a sales representative with ICI Pharmaceuticals, then joined Sanofi Pasteur and Sanofi where he became International Product Manager, Marketing Director, Business Unit Manager, managing diverse programs in the USA, Europe, Latin America and Asia, with positions based in France, Italy, and Asia. He then joined Sanofi Corporate Communications as a spokesperson, also managing key global partnerships with Communications and Media Buying Agencies. Geoffroy is a Pharmacist by training and handles a MBA from HEC Business School (France).

Helen Haskell

Co-Chair of the WHO Patients for Patient Safety Advisory Group & President of Mothers Against Medical Error

Helen Haskell is also president of the Consumers Advancing Patient Safety. Since the medical error death of her young son Lewis, Helen has devoted herself to healthcare safety and quality in a number of areas including medication safety, diagnostic error reduction, and infection prevention, among others. She serves on US and international boards and committees including the board of directors of the Institute for Healthcare Improvement and the board of advisors of the International Society for Rapid Response Systems. She is co-chair of the World Health Organization’s Patients for Patient Safety Advisory Group and of the Patient and the Public Workgroup for the WHO Global Patient Safety Challenge in Medication Safety. Helen is author and co-author of numerous articles, book chapters, and patient educational materials, including a recent co-edited textbook of case studies in patient safety from the patient perspective. Her son Lewis’s story has been featured in widely viewed educational programs and videos including Transparent Health’s The Lewis Blackman Story, shown in medical and nursing schools around the US.  Helen holds a bachelor's degree in Classical Studies from Duke University and a master’s in Anthropology from Rice University.

Hussain Jafri

IAPO Board Member & Secretary General of Alzheimer's Pakistan

Hussain Jafri is the current IAPO Treasurer as well as a former Chair of IAPO. He is the Vice Chair of WHO’s Patients for Patient Safety Program’s Advisory Group and has vast experience of working as a volunteer in the social sector and as an active Board Member of numerous national and international patient organizations. Hussain is a PhD from University of Leeds, UK on prevention of genetic disorders. He is currently working as the Deputy Project Director of Punjab Thalassaemia Prevention Programme and has published several publications in international indexed journals.

Janis Bernat

Director of Biotherapeutics and Scientific Affairs at the International Federation of Pharmaceutical Manufacturers and Associations (IFPMA)

Janis Bernat joined IFPMA in 2006 and is responsible for the Association’s committee focused on developing strategic regulatory direction and science policy.  This Committee fosters coordination with multilateral stakeholders and national associations on issues related to small molecules, vaccines & biotherapeutics. She is also responsible for leading the Association’s regulatory team. Janis holds degrees in agriculture, food science, and mass communications from several US universities. Prior to joining IFPMA, she worked for a US-based multi-national food company in quality assurance and regulatory compliance.

Jolanta Bilińska

IAPO Chair & President and Founder of the Patient Safety Foundation

Jolanta Bilińska is a widely respected international expert in public health and an experienced patient advocate. She has been a WHO Patients for Patient Safety Champion and is published widely on many health issues. Jolanta has represented IAPO at the highest forums like the World Health Assembly, WHO Regional Committees and the UN High Level Panels. She held high level positions within the Polish health system as Director for Development and Social Communication at Jonscher Hospital in Lodz, and Head of the International Cooperation Department and Coordinator concerning the European Union, both at the National Health Fund in Lodz.

Katharina Kovacs Burns

Board Director and Past Chair of Best Medicines Coalition of Canada & Professor at the School of Public Health, University of Alberta & Senior Consultant at Alberta Health Services, Canada

Katharina (Kathy) Kovacs Burns, MSc, MHSA, PhD is a patient, member of Patients for Patient Safety Canada affiliated with the Canadian Patient Safety Institute and WHO Patient Safety Alliance, volunteer Board Director and Past-Chair of the Health Coalition of Alberta, and on the Steering Committee for Patient Engagement in Patient Oriented Research in Alberta, Canada. She advocates with and for patients, families, caregivers and the public to be engaged in discussions regarding their experiences or stories related to access, safety and quality of health services and treatment, as well as be actively involved in making recommendations and decisions regarding health care and related policy improvement. She also partners with patients and various community and government stakeholders through her healthcare and policy impact and improvement research interests as an academic in the School of Public Health, University of Alberta.  And as Senior Consultant in Alberta Health Services, Canada, specifically with Quality Healthcare and Improvement & Clinical Quality Metrics, she engages with patients, families, caregivers, healthcare providers and health system decision makers, focusing on co-designing quality improvement Patient and Family-Centred Care initiatives, including measuring patient experiences and health outcomes, and healthcare provider experiences. 

Katthyana Aparicio, MBA, MSI

Programme Officer Service in the Delivery and Safety Department of the Patients for Patient Safety Programme at the World Health Organization (WHO)

Katthyana has been working for WHO since 2006. She joined the former Patient Safety Programme in 2007 and played an important role in project management and evaluation of the Patient Safety Research Small Grants Programme. From 2013 she has been working for the Patients for Patient Safety Programme (PFPS) and for the Twinning Partnerships for Improvement. Katthyana has extensive experience on quality and safety. Her role includes the management of multi-cultural projects with a focus on global networks management and institutional health partnerships implementation. She liaises closely with members of Spanish and French speaking countries, she provides support to countries on capacity development for engagement of patients, families and communities. Katthyana has business administration and project management background. She is fluent in English, French and Spanish. Katthyana holds two master degrees from the University of Geneva, one in Business Administration and the other in Information Systems and has completed formal training in Project Management.

Kawaldip Sehmi

CEO of the International Alliance of Patients’ Organizations (IAPO)

Kawaldip is a patient who is championing for the rights of vulnerable patients globally. He has extensive experience in paediatric healthcare and children and adolescents mental health services. He previously held the position of CEO at Richmond Psychosocial Foundation International and worked as Managing Director of Coram Children’s Legal Centre. He has European and international public health experience as Director of the Global Health Inequalities Programme and as Chairman of the European Network of Quitlines during the successful negotiations and ratification of the WHO Framework Convention on Tobacco Control. Kawaldip’s qualifications include an MSc in the Public Health International Programme from the London School of Hygiene and Tropical Medicine, a Master’s in Business Administration and an LLB (Hons). 

Lasse Funch Jacobsen

Associate Director of Global Patient Relations at Novo Nordisk A/S

Lasse joined Novo Nordisk in 2010 and has worked in several areas of the value chain. He co-led the establishment of the Global Patient Relations unit in Novo Nordisk in 2015 under the supervision of Camilla Krogh Lauritzen. Lasse is leading the Network and Alliance part of the team and its main role is to represent Novo Nordisk in consortia and projects supporting patients and their voice. Some of the current projects that Lasse is involved in are EUPATI, PARADIGM and HYPO-RESOLVE, the latter is a 5 year IMI project, where he is co-leading a Patient Advisory Committee ensuring insights, directions and experience from people living with diabetes. Lasse is also driving an internal patient engagement network in Novo Nordisk as well as a flagship annual event ensuring that patients are at the centre of all Novo Nordisk is doing through closer collaboration and partnerships with patients and their organisations.

Linda Porter

Director of the Office of Pain Policy at the National Institutes of Health (NIH)

The Office of Pain Policy was established in response to recommendations from the 2011 Institute of Medicine report on pain. Dr. Porter holds a bachelor’s degree in Physical Therapy from McGill University and a Ph.D. in Neuroscience from Boston University. She trained in neurophysiology at Rockefeller University and then served on the faculty of the Uniformed Services University Medical School, where she directed an NIH funded research program aimed at elucidating mechanisms of sensory-motor integration. Dr. Porter joined the National Institute for Neurological Disorders and Stroke in 2003 and at that time was responsible for managing the institute’s pain research portfolio. She played an essential role in promoting the objectives and activities of the NIH Pain Consortium, a trans-NIH entity whose mission is to advance the NIH pain research agenda. Dr. Porter became Director of the Office of Pain Policy in 2012. Her office continues to support the NIH Pain Consortium and the Interagency Pain Research Coordinating Committee, an advisory committee to the Secretary of Health and Human Services. She co-chaired the development of the National Pain Strategy report and now co-chairs the Strategy’s implementation committee. She also co-chaired the development of the Federal Pain Research Strategy.  Dr. Porter has been recognized for her work in advancing the federal pain research agenda and efforts on moving forward the National Pain Strategy by a President’s Award from the American Academy of Pain Management and the Emma and John Bonica Public Service Award from the American Pain Society.

Lisa Stewart, MA

Engagement Officer at the Patient-Centered Outcomes Research Institute (PCORI)

Lisa acts as a liaison between the Engagement and Science programs, helping to manage the patient and stakeholder aspects of the organization’s research portfolio. Before joining PCORI, she led stakeholder teams as a co-investigator for patient-centered research studies. She began working in health systems as a patient/family navigator in pediatric care. In that role she provided peer support to families of children with complex medical conditions and served as a consumer representative on quality improvement initiatives. She co-led Children’s National Health System’s patient and family advisory council as well as the community advisory board for its NIH Clinical and Translational Science Award. She was formerly a member of the DC-Baltimore Research Center for Child Health Disparities

Margareth Ndomondo-Sigonda, M.Sc., M.B.A.

Head of Health Program at the African Union - New Partnership for Africa’s Development (NEPAD) Agency    

Margareth heads the Health Programs at NEPAD since September 2016, and served as Pharmaceutical Coordinator since March 2010. Responsible for coordination of health and pharmaceutical programs including the African Medicines Regulatory Harmonization Initiative, as part of the African Union Health Strategy and Pharmaceutical Manufacturing Plan for Africa. Served as Chief Pharmacist (1998), Registrar of Pharmacy Board (1998-2003) and Director General of the Tanzania Food and Drugs Authority (2003-2010); Ministry of Health and Social Welfare, Tanzania. Margareth holds MSc degree in pharmaceutical services management, University of Bradford United Kingdom; MBA the Eastern and Southern Africa Management Institute-Tanzania/Maastricht School of Management-Netherlands; and bachelor’s degree in pharmacy from the University of Dar es Salaam, Tanzania. Currently pursuing doctoral studies at the University of the Witwatersrand, Johannesburg, South Africa.

Maria Pia Ruffilli, MD

Senior Director Therapeutic Area International Public Affairs Team Lead at Pfizer

Born and raised in Italy, Maria Pia is a physician with extensive background as researcher and healthcare provider. Some of her research has been published in international journals such as The Lancet, International Journal of Endocrinology, Journal of Chemotherapy, Journal of Oncology. Over the past 35 years, Maria Pia has worked in the private sector and joined Pfizer Italy as Medical Director and then led the Marketing, Sales, and Public Affairs and Access departments. In October 2007, Maria Pia joined the Global Corporate Affairs team in the Pfizer New York Headquarters, and she works in the Global Policy and International Public Affairs Division as Therapeutic Area International Public Affairs Team Leader. Her team partners worldwide with advocacy organizations and other stakeholders to advance policies and programs that positively impact the patient’s lives. When Maria Pia was still in Italy, she was the President of the Corporate Social Responsibility National Association (ANIMA), the President of the Italian Group of American Pharmaceutical Companies (IAPG) and the Vice President of the Italian Association of the Pharmaceutical Companies (Farmindustria). In June 2005, she has won the most prestigious prize for Italian Business women, the “Marisa Bellisario” prize, for her activities in the Pharmaceutical Industry and in the CSR area. Maria Pia graduated magna cum laude in Medicine from the Catholic University in Rome and specialized magna cum laude in Endocrinology, and in Dermatology from the same University.

Marta Nowotarska

Global Patient Relations at Novo Nordisk A/S

Joining Novo Nordisk in 2016 in the newly established Global Patient Relations unit, Marta has played a crucial role in the development of this function, especially in the innovative uses of social media and digital channels. Marta was responsible for the patient “take-over” of Novo Nordisk social media channels where 3 different patients took-over the company’s Facebook, Instagram and Twitter channels. As member of the Global Patient Relations team, Marta acknowledges patients as experts in their own right whose unique insights of what it is like to live with a chronic disease can enhance the future of patient care. With the Global Patient Relations team, Marta works in partnership with a network of patients and patient advocates - the Disease Experience Expert Panels (DEEPs) - to ensure patient involvement across the value chain. Marta has a Master’s degree in Psychology, a Bachelor's in International Economics and a passion for digital. She combines these to provide innovative and insightful ways to engage with patients and ensure their voices are heard. 

May Orfali

Executive Director within Rare Diseases at Pfizer

Dr. Orfali is a pediatric hematologist/oncologist with 20+ years of drug development experience in a broad range of therapeutic areas, including hematology, pulmonary, metabolic disorders, oncology, women’s health and anti-infective. She has led multiple FDA and EMA interactions including NDA, sNDA, 510K submissions for small molecule, biologics and devices. She has led multiple business development activities and was instrumental in bringing on board gene therapy assets to Pfizer Rare Disease. Prior to joining Pfizer Oncology group in 2009; she was the vice president of clinical development and medical affairs at Artisan Pharma developing a late stage asset for disseminated intravascular coagulation, prior to that she was the Vice President of clinical development for Aeris Therapeutics. She gained her medical degree from the University of Baghdad School of Medicine and completed pediatric oncology fellowship program at MGH and Children’s Hospital in Boston, MA.

Myrna Burgos

Talent, Organizational Performance and Project Director Consultant at Policy Wisdom LLC

Myrna Burgos has extensive experience in human resources management, development and implementation of training programs related to performance management and organizational development. Prior to joining Policy Wisdom, Myrna was Human Resources Business Partner at Merck Corporation supporting the sales and marketing operations in Puerto Rico and the Caribbean, and previously was Human Resources Manager and Corporate Training Programs Lead for Latin America. Myrna completed a Bachelors’ in Business Administration at the University of Puerto Rico and is certified by the Society of Human Resources Management as a Senior Professional in Human Resources. She is experienced in facilitating and supporting the development and implementation of performance and leadership training programs. Myrna’s role at Policy Wisdom includes management of projects related to organizational planning, advocacy, company operations, sourcing and coordinating the availability of human resources to execute projects, ensuring that products and services delivered to clients are of utmost quality, and supporting the Company’s growth and business development.

Nathalie Bere, MPH

Patient Relations Coordinator at the European Medicines Agency (EMA)

Nathalie has been working with the European Medicines Agency in London for over 20 years and is currently responsible for its engagement with patients and consumers. Patients bring specific knowledge and expertise from their real-life experience of the condition and its treatment to the scientific discussions, and their contributions have led to better outcomes for everyone involved. Over the years, she has been dedicated to creating opportunities for the inclusion of the patient’s voice in every aspect of the regulatory lifecycle of a medicine.  Experience at EMA has demonstrated that it is essential to be flexible and to test and implement a range of engagement methodologies to best suit the various activities. As a steady increase in patient engagement at EMA has been observed, Nathalie will look to further strengthen these activities through constant exchanges with all stakeholders to ensure interactions are as mutually beneficial as possible. Nathalie holds a Master’s in Public Health from the University of East London (UEL) and has a Bachelor of Science in Psychology. 

Neda Milevska-Kostova

IAPO Board Member & Executive Director of the Centre for Regional Policy Research and Cooperation “Studiorum”

Neda holds MA in public policy and management, and PhD in public health. She has participated in a number of advocacy and legislative processes, including the promotion of patients’ rights in South East Europe, the creation and the passing of patients’ rights law in Macedonia, and is a strong supporter of patient-centred health systems. She has been the team leader and researcher of many projects related to rights to health, health care reforms, and promoting health as a contributor to economic growth and societal development. She has experience in implementing national health policies; strengthening networks; supporting newly established patient organizations in South East Europe; public policy development and advocacy at governmental level, professional associations and scientific congresses and symposia; and fundraising.

Penney Cowan

IAPO Chair-Elect & CEO and Founder of the American Chronic Pain Association (ACPA)

Over the past 38 years, Ms. Cowan has been an outspoken advocate and consumer representative for pain issues, contributed to numerous books, videos and websites, and consulted on the development of several pain management programs.  Ms. Cowan is a recognized speaker advocating a multi-disciplinary approach to pain management. Currently she serves on the Board of the American Chronic Pain Association and International Alliance of Patients’ Organizations.

Peter Boyle, BSc Phd DSc(Med) FRSE FFPH FRCPS(G) FRCP(E) FRCP(I) FMed Sci

President of the International Prevention Research Institute (iPRI)

Professor Boyle is the inaugural Director of the University of Strathclyde Institute of Global Public Health at iPRI and is Professor of Global Public Health at the University. He is founder and President of the World Prevention Alliance, a non-governmental organization committed to prevention research and actions in lower income countries. He is the Editor of the State of Oncology in Africa 2015 and the accompanying film ‘Cancer is … Killing Africa’, which highlight the need for action against chronic disease in low-resource countries. In July 2017 he was presented with the Royal Medal of the Royal Society of Edinburgh by Her Majesty Queen Elizabeth.

Dr. D S Ratna Devi

IAPO Board Member & CEO of DakshamA Health & Founder of the Indian Alliance of Patient Groups (IAPG)

A medical doctor, public health and management professional, Dr. Ratna Devi brings more than 28 years of experience working to improve health outcomes in India. She spent her initial 10 years in the government and for the past 18 years, she has worked with national and international NGOs on public health initiatives. Dr. Ratna has demonstrated experience managing large-scale programs for success and scaling-up innovative pilot programs across India, at national and state levels. A versatile leader, she combines clinical qualifications to support high-quality service delivery and management experience. She is the CEO and Co-founder of DakshamA Health and Education, an organisation that is dedicated to working for access to health, patient education and advocacy. DakshamA aims to create a network of caregivers and patient groups, and work with them on knowledge sharing as well as providing essential feedback for managing long term and chronic diseases. Dr. Devi works towards achieving these objectives by collaborating with the government and other vital stakeholders. She leads IAPG, a cross disease Patient Alliance in India and is a Board member of I–ORD (Indian Organisation for Rare Diseases). She holds an MBBS degree from Sambalpur University and a dual MBA from SYMBIOSIS and Manipal Institute of Distance Education. She has experience in working with the government and development sector, and has worked towards policy change, human resources capacity building and system strengthening. She is the WHO Technical Expert on the working group for Global Coordinating Mechanism for NCDs on “meaningful involvement of people with NCDs”. Dr. Devi also holds advisory positions at several NGOs and has contributed to research as well as publications. 

Regina Mariam N. Kamoga

Executive Director at the Community Health and Information Network (CHAIN) Uganda

Ms. Regina has served on numerous health advisory committees and boards at national and international level; she is a past board member of the International Alliance of Patients’ Organizations (IAPO). She spearheaded the establishment of the Uganda Alliance of Patients Organizations and is now spear heading the establishment of the Africa Patients Forum (APF). Regina advocates for patient-centred healthcare and patient safety particularly on issues of patient rights, access to medicines in low and middle income countries, substandard and counterfeit medicines and health literacy. She has made presentations at high level meetings including the World Health Assembly-IGWG to discuss ways to foster innovation, build capacity and improve access to health products to achieve better health outcomes in developing countries; EU-Africa Pharma Business to Business; Forum Social Forum 2015 Expert consultation on access to medicines as a fundamental component of the right to health; 2nd Global Ministerial Summit on Patient Safety in Bonn, 2017. She is a patient safety champion of the WHO Patients for Patient Safety programme and a member of the Technical Working Group on Supervision, Monitoring Research and Evaluation – MoH and National Quality Assurance committee.

René Brooks

Mental Health Advocate, Speaker, and Blogger at Black Girl Lost Keys

René Brooks has been a typical ADHDer since as far back as she can remember. She loses keys, books, essays, homework, and her glasses when they are on her face. She created Black Girl Lost Keys to share her experiences of learning how to navigate the world as an adult with ADHD while being part of a demographic that is still largely skeptical of neurological disorders and mental illness. You can find her on Instagram, Facebook, and Pinterest.

Russell McGowan

Member of the Health Care Consumers Association of the ACT

Russell is a bone marrow transplant survivor who has been active in the healthcare consumer movement since the early 1990s.  His working life had included teaching, field work, program management and policy development, mainly involving employment, education and training programs for indigenous people. A former Consumer Commissioner on the board of the Australian Commission for Safety and Quality in Healthcare, he continues to advise on its standards for partnering with consumers, pricing safety and quality and utilising ehealth. He surveys health service performance against accreditation standards and was chair of the State & National Advisory Committees of the Australian Council for Healthcare Standards (ACHS). He recently completed a two year term as an adviser on patient perspective to the Board of the International Society for Quality in Health Care (ISQua). As well as acting as Consumer Lead on the clinical handover standard within ACT Health, Russell participates in numerous community and consumer healthcare organisations in Canberra.  He served as President of the Health Care Consumers Association for ten years, Chair of the local branch of the Public Health Association of Australia and as Deputy Chair of the ACT Health Council.

Ruth Wilson

Global Head of Patient Advocacy at Teva Pharmaceuticals

During the last two years, within her current role as Global Head of Patient Advocacy, Ruth has been building a centralised patient strategy and advocacy capability; managing a diverse cross functional team; and delivering commercially aligned advocacy for Teva’s broad portfolio and business priorities. Ruth’s experience has been gained within public health, social welfare and patient advocacy, local and central government, the not-for-profit sector and the pharmaceutical industry – at domestic, pan-European and global levels. Holding posts within Pfizer, and playing a significant role with the public engagement and support for smoke-free legislation in the UK. Ruth is passionate and committed to the community voice, as well as being a vocal advocate for the pharmaceutical industry, the value it brings and its license to operate in patient partnerships. 

Yasmin Rashid

Secretary-General of the Thalassaemia Society of Pakistan

Yasmin Rashid is a leading politician, prominent patient advocate and an acclaimed doctor of Pakistan. She has extensively worked towards community development and to bring about a positive change in Health especially for the underprivileged and marginalized people of Pakistan with particular emphasis on women, children and patient safety. She has remained the first women President of Pakistan Medical Association. She has also been the Chair of the Pakistan Patient Safety Initiative and has run numerous campaigns for the rights of the patients due to which she has been faced consequences of her activism such as arrests and termination from her services as a doctor. Yasmin works as the professor and head of the obstetrics & gynaecology department, Central Park Medical College, Lahore. She is the pioneer of Feto Maternal Medicine in Pakistan. Yasmin’s experiences as a health activist and patient advocate gave her the realization that the only way to bring about a change in the health of the people is to join politics and get in the driving seat. She is now a prominent political leader of the Pakistan Tehreek-e-Insaf (PTI) and has served as the Secretary General of PTI Punjab. She is the member of PTI’s Core Committee and the president of Insaf Professional Forum. During the 2013 general election of Pakistan, Yasmin drafted the Health Manifesto of PTI and also fought election at NA-120 Lahore and lost against former Prime Minister Nawaz Sharif. The Health Manifesto drafted by her has been implemented in the KPK province where her party formed the government in 2013 and has shown tremendous improvement in the health indicators of the province. She is all sent to contest the upcoming general elections of Pakistan in the summers of 2018.

Jay Purdy, MD,PhD

Senior Director in anti-infectives at Pfizer

Dr. Purdy is an Infectious Disease physician with a Ph.D. in microbiology, focused on virulence gene regulation in the enteric parasite Entamoeba histolytica, the cause of amoebic dysentery and liver abscess.  Subsequently, Dr. Purdy completed his Internal Medicine residency and Infectious Disease fellowship at the University of Iowa studying Leishmania chagasi, the human parasite causing visceral leishmaniasis in the New World, before joining the faculty at the University of Chicago, where he continued the study of leishmaniasis in his NIH supported laboratory, trained graduate students and post-docs, taught travel medicine/parasitology in the medical school, trained house staff, attended on the in-patient infectious disease service, lead the University of Chicago’s adult vaccination/travel clinic and established the Pritzker Academy of Distinguished Medical Educators, Geographic Medicine Scholars.  Dr. Purdy joined Wyeth 10 years ago before it was acquired by Pfizer.  During his time with Wyeth and Pfizer he lead tigecycline pediatric clinical studies, phase 1/phase 2 compound development projects, in-licensing evaluations of assorted compounds and was the medical lead on the launch of the vaccine, Prevenar 13, in adults.   He now leads the global medical affairs team in Asia, Latin America and Africa-Middle East and is responsible for above-brand strategy in Anti-infectives.  

Kate Beale

Associate Vice President for International Advocacy at the Pharmaceutical Research and Manufacturers of America, PhRMA

Kate joined PhRMA in February 2017 as Associate Vice President for International Advocacy. In this role, Kate leads PhRMA’s work in India and emerging markets. Prior to joining PhRMA, Kate served in the U.S. government over the last 15 years, most recently as Deputy Assistant Administrator for Latin America and the Caribbean at the U.S. Agency for International Development (USAID). At USAID her work focused on overall strategy of the agency and specific programs in global health, humanitarian assistance and governance across the 13 bilateral missions & three regional missions. At USAID, Kate also played a leadership role in developing the response to the Haiti Earthquake and broad engagement of Congressional leadership to secure funding for Haiti relief programs and policies. Prior to USAID, Kate worked at the Peace Corps, beginning as Director of the Office of Congressional Relations where she led the negotiations for the agency’s highest budget request to date and managed the implementation of the Kate Puzey Volunteer Protection Act. After her work in Congressional Relations, Kate was selected as the Director of Peace Corps Response where she led a reorganization that resulted in a record number of Volunteers, the expansion of the Global Health Service Partnership into Liberia and Swaziland and the launch of innovative private sector partnerships with companies such as IBM and Johnson & Johnson.  Prior to the Peace Corps, Kate worked on Capitol Hill as a legislative staff member to Senator Hillary Rodham Clinton, handling appropriations and economic development policy and later as Legislative Director for Senator Kirsten Gillibrand. Kate began her career in public service with the Peace Corps as a Volunteer in Paraguay from 2002 to 2004. Kate lives in Washington, DC.  

Rick Greene, MSW

Executive Advisor to the National Alliance for Caregiving & IACO (International Alliance of Carer Organizations)

Rick Greene started his career in aging at the New Jersey Department of Health and Senior Services. As a result of his state successes, the U.S. Administration on Aging selected Mr. Greene in 2000 to be the first Director of the National Family Caregiver Support Program. In 2009, Mr. Greene transferred to the U.S. Department of Veterans Affairs. He currently serves as an Executive Advisor to the National Alliance for Caregiving, and to the International Alliance of Carer Organizations, where he convenes an international body of caregiving advocates from 15 member nations. In 2017, IACO and its member organizations launched an international study on caregiving for persons with heart failure, and a Toolkit on the caregiving infrastructure that can be applied globally.

Meagan Bates

Associate Director, Patient Advocacy and Strategic Partnerships at EMD Serono 

In her current role, Meagan leads the global Embracing Carers initiative which brings together leading carer stakeholders from around the world to collaboratively address the public health issue of caregiving. Prior to joining EMD Serono, Meagan served at multiple, leading multiple public affairs firms, specializing in the development of patient advocacy initiatives and communications campaigns to impact media, policy and public opinion for a variety of healthcare stakeholders.