Professor Alice AndrewsDirector of Education, Value Institute for Health and Care - University of Texas at Austin
Alice Andrews, PhD, is Director of Education at the Value Institute for Health and Care and faculty at Dell Medical School and McCombs School of Business at the University of Texas at Austin. Her research focuses on the implementation of health care solutions designed around outcomes that matter to patients and developing integrated learning teams to lead this change. Dr. Andrews has taught programs on topics related to implementing high-value health care and health care transformation worldwide, and she is a member of the inaugural advisory board for the Welsh Value in Health Centre, NHS. In 2019 and 2021, she was a recipient of a Dell Medical School Academy of Distinguished Educators Excellence in Teaching award. Dr. Andrews holds a PhD in Organizational Behavior from Cornell University and an MS from Dartmouth College, and in addition to the University of Texas, she has served on the faculties of The Geisel School of Medicine at Dartmouth and the Owen Graduate School of Business at Vanderbilt University.
Aurelio MejiaDirector of Regulation, Ministry of Commerce, Industry and Tourism
Economist, Specialist in Government, Management and Public Affairs and Master in Health Economics. Director of Regulation of the Ministry of Commerce, Industry and Tourism and professor of Health Economics at various universities in Colombia. Former Director of Medicines of the Ministry of Health and Social Protection and Former Deputy Director of Technology Assessment of IETS, the health technology assessment agency of Colombia. Co-editor of Value in Regional Health Issues.
Diego Fernando Gil CardozoExecutive Director, Colombian Federation of Rare Diseases - FECOER
Industrial Engineer from the Pontificia Universidad Javeriana Cali and Specialist in Administration from the ICESI University. President of the Blue Fabric Association, an organization that supports patients with pulmonary hypertension and their caregivers since 2013. President of the Board of Directors and Executive Director of the Colombian Federation of Rare Diseases -FECOER- since 2020. Technical Advisor of the Colombian Network for Access to biotechnological drugs (BIOREDCOL). Member of the Expert Panel of the Collaborative Global Network for Rare Diseases (CGN4RD).
Begonya NafriaCoordinator of the Patient Participation in Research, Sant Joan de Déu Barcelona Children's Hospital
She is Patient Engagement in Research Coordinator at Sant Joan de Déu Chidren’s Hospital (Spain). She has long experience in the field of the involvement of patients and families in research initiatives. She has also a personal story as a caregiver and patient advocate because is the sister of a young adult with cerebral palsy. Her areas of expertise are focused in paediatric patients' involvement in research and specifically in the field of clinical trials. She is currently a PhD student in the patient involvement in paediatrics field. Other relevant background of her profile is: Fellow of EUPATI (first cohort), Coordinator of eYPAGnet (European Young Patients Advisory Group Network – www.eypagnet.eu), Coordinator of Kids Barcelona (YPAG of Sant Joan de Déu Children’s Hospital- www.kidsbarcelona.org), member of Children’s Medicines Working Party of EFPGCP, volunteer member of the Editorial Board of Center for Information & Study on Clinical Research Participation (CISCRP), member of the Patients and Families working group of EnprEMA (European Network of Paediatric Research of EMA). Coordinator of the cross-cutting theme of patients involvement in Conect4Children project (pan-European paediatric clinical trials network).
Carmela OrangesExecutive Director, Medical Affairs Cluster North LATAM, MSD
Carmela Oranges leads the Medical Department in Cluster North LATAM for MSD, which includes Colombia, Ecuador, Puerto Rico, Central America and the Caribbean, based in Panama. As Medical Director, she has been responsible for collaborating a network of local thought leaders to facilitate local scientific discussion. Carmela also leads the Medical Affairs organization to support MSD operations in all countries of the sub-region.
Her most recent assignment was as Oncology Therapeutic Area Lead in the North Cluster. Previously she served as Medical Director for Central America and the Caribbean until June 2020, prior to that, in MSD Venezuela since August 2016. She also previously served as Medical Manager (2005- August 2013) and Compliance Officer (2008-2010)
She received her bachelor’s degree in Medicine from the University of Oriente, Cd Bolívar, Venezuela followed by a Post graduate degree in Pediatrics from the Central University of Venezuela.
Carmela has spent most of her professional career with MSD, starting as Medical Manager leading Continued Medical Education projects. Carmela has presented posters in scientific congresses and published articles in several journals.
Daniel MarínMember KIDS, Sant Joan de Déu Barcelona Children's Hospital
I am a patient of acute lymphoblastic leukemia, diagnosed in 2017 when I was 14 years old. In 2019 I achieved complete remission of cancer.
Since 2018 I have been part of the KIDS Barcelona scientific committee of the SJD Barcelona Children's Hospital in Barcelona. Our goal as a group is to involve young people, patients and non-patients, in pediatric research and innovation in order to adapt both to the needs of younger patients.
Estefanía MalassisiYoung Leader, Association for Diabetes Care in Argentina - CUI.D.AR
My name is Estefanía Malassisi, I am 27 years old and I have lived with type 1 diabetes since I was 2 years old. I am a final year medical student and I want to specialize in paediatrics and diabetes. I am a Young Leader of the Association for Diabetes Care in Argentina - CUI.D.AR, I work in the Advocacy area and I am in charge of the Programs and Projects for children and young people in my Organization. I am Mentor and Young Leader of the Young Leaders in Diabetes Program of the International Diabetes Federation (IDF) since 2015; member of Blue Circle Voices (IDF) since 2017; former member of the Steering Committee of Youth Representatives of the United Nations Department of Global Communications. I am a diabetes educator, part of a diabetes NGO in the United States, and I work for Italy. Over the years, I have learned that diabetes does not impose limits, and that despite living my whole life with a non-communicable disease, I have a lot to pass on. I am passionate about working at Advocacy to be able to influence and modify public policies and generate positive impacts in the lives of people living with diabetes around the world. Being able to accompany, empower and be close to children, adolescents and young people, who like me live with diabetes, is definitely also something inspiring for me.
Professor Felipe TapiaDirector, Maxi-Life Chile
Engineer in Business Administration, Master in Public Management, with extensive experience in development and work with social organizations, representative of social organizations in different instances, both national and international. Professor Felipe Tapia has worked in the municipality of Vitacura and Lo Barnechea as a professor in municipal programs for the last 16 years, University professor in different areas. He is Spokesperson and Director of Maxivida Chile, a corporation for patients and families with cancer. Director of Red Alianza Latina, an international organization of patient NGOs, creates a registration format in Excel format for patient organizations used throughout Latin America. Member of the CML Advocates Network Steering Committee 2021, representing Latin America. Always developing new knowledge and contributing new processes to each of the processes in which it participates, innovative, tireless, cheerful and always thinking that education is an art in constant development.
Fernanda de CarvalhoPublic and International Affairs Director, Institute Side by Side for Life
Fernanda de Carvalho is a journalist, specialist in stakeholder engagement and reputation management. She joined Instituto Lado a Lado pela Vida (LAL) in 2016 as Communications director. In 2018, took over the institutional and international affairs area, representing LAL at global events and patient councils. She works alongside the presidency and the director of special projects to create strategies that promote positive impact on public policies and contribute to the sustainability of Brazil's healthcare systems. Before joining LAL, she was senior executive in multinational companies coordinating teams in Latin America, with active participation in global communications and crisis management committees.
LAL was founded in 2008 to promote awareness on the importance of prevention; health promotion and to offer good information about treatment and rehabilitation for patients who deal with the daily activities as a cancer or cardio diseases survivor. It is the only Brazilian organization dedicated to men’s health. In 2011, LAL launched the Blue November campaign focusing on the reduction of prostate cancer in Brazil and to empower men to be protagonists of their health. LAL is a leading voice to eradicate HPV in Brazil, the main cause of cervical cancer and other tumors.
Irvin RistieHealth and Communication Coordinator, Coordinator of the Indigenous Organizations of the Amazon Basin - COICA
Irvin Ristie comes from Arowak, Karib and Javanese-Indonesian descendance in Suriname. After his hospitality and tourism studies in 2005, he has been working with different indigenous communities in the Guiana Shield. In 2014 he started volunteering work for the indigenous organization in Suriname. He was elected in June 2018 as Coordinator of communication and health area within the regional organization COICA (Coordinadora de las Organizaciones Indígenas de la Cuenca Amazónica) and representative member of the Organization of Indigenous Peoples in Suriname council (OIS). Since 2019, he is one of the focal points for Suriname of the project for the protection of indigenous populations living in isolation on the border between Brazil and Suriname. During the pandemic in 2020, he coordinated in the field together with the OIS members the Amazon Emergency Relief fund providing the most vulnerable indigenous communities with health and food supplies. He embodies this new generation of Surinamese Young indigenous leaders who wish to stay to participate in the deployment of a sustainable economy, respectful of the environment and advocating for the recognition of indigenous cultural, socio-economic and territorial rights. He was the focal point of the Amazon emergency fund of the Guianas during the Covid-19 Pandemic and Coordinator of the health and food security in Suriname.
Dr Jeff Markuns, MDExecutive Director, Primary Health Care Performance Initiative
As a practicing family doctor for the urban underserved, with fellowship training in health professional education and almost two decades of experience in postgraduate training for Family Medicine, Jeff has developed a deep understanding of frontline primary health care and the human resource capacity-building necessary to support its success. As Executive Director of the Boston University Global Health Collaborative, Jeff has led successful long-term Family Medicine development programs over the last decade to promote primary health care system strengthening throughout southeast Asia and in Lesotho in southern Africa, working towards national-level scale up of horizontally and vertically-integrated primary care service delivery models. Jeff’s experience with challenges in measuring and evaluating this success drives his pursuit of more and better measurement with PHCPI. Jeff received his bachelor’s degree from the University of Massachusetts, his MD at Saint Louis University, and his masters of education at Boston University.
Leonardo Semprún, RPhSenior Director Global Regulatory Policy Latin America- MSD
Leonardo is currently Senior Director, Global Regulatory Policy for Latin America at MSD, based in Panama. In this role, he is responsible to define and execute a regional regulatory policy plan that addresses current and future business needs, while also advocating for and anticipating regulatory change with LATAM-based regulators and multilateral organizations by participating in regional networks such as FIFARMA where he is currently co-chair of the Regulatory Challenges Sub-Group and EPFIA Latam Network as Vice-chair. He has also participated in the Pan America Network for Drug Harmonization (PANDRH) from PAHO and currently is a member of the program committee at DIA Latin America Regulatory Conference.
Leonardo has more than 18 years of professional experience, having dedicated the last 10 years to develop a solid career at MSD in different functions and geographical areas. He also held positions at Johnson & Johnson, Astra Zeneca, and Autonomic Service of Intellectual Property.
Leonardo holds a Pharmacy degree with a major in Toxicology and Industrial Hygiene from the Central University of Venezuela in Caracas, a Pharmaceutical Business Specialization from the same university, and a Project Management Certification from Florida State University.
Kawaldip SehmiCEO, International Alliance of Patients’ Organizations
Kawaldip is the chief executive officer of the International Alliance of Patients’ Organizations.He has an academic background in public health and law and has a passionate belief in improving access to services through digital health and justice services. As the managing director of an international children’s legal center, he led a team of international lawyers improving the rights of the child, including right to health, by applying Remote Courts. He has also served as the chief executive officer of an international mental health charity, specializing in niche mental health services supporting young people and adults with complex mental health, personality disorder and substance misuse problems access telehealth and digital mental health services. Kawaldip is a passionate advocate of the WHO’s human rights based approaches to health and strengthening of the institutional, legislative, policy, practice and standards framework. He believes this support is needed to achieve the health goals outlined in the Sustainable Developmental Goals 2030, specifically in SDG 3.8,.to ensure universal health coverage for all.
Liliana TieriBoard Member – Latin America, International Alliance of Patients’ Organizations
Liliana Tieri is the Founder and Executive Director of the Association for the Care of Diabetes in Argentina CUI.D.AR. With more than 20 years of experience in the socio-health sector, she is a tireless fighter working to improve the quality of care, accessibility and quality of life for people with diabetes. She is involved in the formulation of public policies in Argentina with the aim of transforming them into solid, inclusive, equitable and effective policies for people with diabetes. She has experience in managing large-scale programmes and in leading and working in a consortium of organisations from different pathologies to create environments that enable the active participation of civil society to achieve effective policies, partnerships and programmes.
In 2001 Liliana founded CUI.D.AR, a non-profit NGO that works for children, young people and adults living with diabetes to minimise the impact of this chronic condition on their lives and over the years has become the largest Community of People with Diabetes in Argentina, and the second-largest in Latin America. Liliana is a member of the NCD LABS Steering Committee of the World Health Organization (WHO); a delegate for Argentina and CUI.D.AR to the International Diabetes Federation (IDF); a member of the Diabetes Advisory Commission of the Ministry of Health of Argentina (MSAL); a member of the Council for the Promotion and Protection of Children's Rights in local government; a member of the Blue Circle Voices Global Network of the International Diabetes Federation (IDF).
Dr. Maira CaleffiVolunteer President, Brazilian Federation of Philanthropic Institutions in Support of Breast Health - FEMAMA
Dr. Maira Caleffi is a Breast Surgeon and Chief of the Breast Center at Hospital Moinhos de Vento, Porto Alegre, Brazil; Volunteer Presidenta at FEMAMA - Brazilian Federation of Philanthropic Institutions in Support of Breast Health. Chair of the Executive Committee of the C/Can Porto Alegre (Brazil). Local Leader of Integrated Cancer Control Initiative in Latin America – ICCI-LA (Brazil). Chair of the Board of Directors of the IGCC (Instituto de Governança e Controle do Câncer).
Dr. Caleffi holds Pharmacy and Medicine degrees, Residency in Gynaecology and Obstetrics and she is specialized in Breast Surgical Oncology by Guy’s Hospital in London UK. She completed her doctoral thesis in Medicine at the University of London, UK, and undertook post-doctoral studies in Genetics and Breast Cancer at Vanderbilt University, Nashville, USA. She served as a Board member of the Union of International Cancer Control (UICC) from 2012 to 2018, and Technical Consultant for GBCI WHO and Chair of the Executive Committee of the City Cancer Challenge Porto Alegre Brazil. Dr Caleffi is the Founder and Volunteer President of FEMAMA and IMAMA (Instituto da Mama do Rio Grande do Sul). Presently, she develops academic, research, teaching and patient-care activities with a highly multi-professional team.
Dr. Mark BaroneFounder and General Manager, Intersectoral Forum to Fight NCDs in Brazil (ForumDCNTs)
Dr. Mark Barone is an active researcher and advocate living with type 1 diabetes and celiac disease since the age of 10. He holds a PhD in Human Physiology and two post-graduate diplomas, in Diabetes Education and in Communication. With more than two decades of experience in public and global health, research, education, empowerment, and advocacy, he has partnered with organizations and leaders to develop and implement programs to improve access to care and empower individuals with NCDs, HCP, among other stakeholders.
In the beginning of the 2000’s, he joined ADJ Diabetes Brasil in movements that led to the full coverage of diabetes care in the Brazilian public health system. He continued working to facilitate intersectoral and intrasectoral partnerships with potential to respond effectively to complex health challenges, such as the noncommunicable diseases. He is currently Vice-President of the International Diabetes Federation (IDF), Founder and General Manager of the Intersectoral Forum to Fight NCDs in Brazil (ForumDCNTs), member of the Steering Committee of Life for a Child (LFAC) International and of the NCD-LAB/GCM/WHO, member of the Scientific Advisory Board of the IAPO, and member of the BMJ Patient Advisory Panel and of the Ramaiah International Centre for Public Health Innovations (RICPHI).
Nathalie BerePatient Engagement - European Medicines Agency (EMA)
Nathalie has been working with the EMA since 1998 and is currently responsible for its engagement with patients and consumers. Over the years she has been testing and implementing various methodologies and today the patient’s voice is included all along the regulatory lifecycle of a medicine at EMA.
Nathalie continues to further strengthen and diversify these activities and ensure they are fit for purpose in an evolving health landscape. Patients bring specific knowledge and expertise to the scientific discussions from their real-life experience of living with a condition and their contributions lead to better regulatory outcomes. Nathalie holds a Master in Public Health and a Bachelor of Science in Psychology.
Dr Neda Milevska-KostovaChair, International Alliance of Patients’ Organizations
Dr Neda Milevska-Kostova is president of Studiorum, a regional think-tank working on research and policy aspects of health and wellbeing in Europe. Neda has over 20 years experience in health research, policy and patient advocacy. She holds a MSc in functional pharmaceutics (University of Tokyo), MA in public policy (University of Pittsburgh, USA), and a PhD in public health (University of Sheffield, UK). Neda is also a Vice-president of Health First Europe, an umbrella organization based in Belgium working on improving access to innovative health technologies in Europe. In 2018, she was awarded the title Primarius by the Minister of Health for exceptional and long-term commitment to the advancement of health system and population health in Macedonia.
Raquel PeckDirector, Clarion I
Raquel Peck is a well-known advocate in the field of liver health and prior to founding her consulting company in 2018 (Clarion I.), she spent over 15 years advocating on behalf of people living with viral hepatitis.
As a patient herself, she helped establish and eventually became the CEO of the World Hepatitis Alliance, an international organisation composed of 300+ groups in over 90 countries. Raquel's work in the field was integral to the adoption of three WHO resolutions - one of which she drafted on behalf of the government of Brazil - and now viral hepatitis features in the SDG agenda, with a clear goal of elimination by 2030.
Raquel also started a global movement (NOhep) to unite and strengthen the viral hepatitis community and was recognised as a change-maker by the Economist Intelligence Unit.
Since founding Clarion I, she has been consulting for organisations and initiatives driving progressive change i.e. helping to shape strategy and content for the International Experience Exchange with Patient Organisations (Chair capacity); building the first-ever international liver cancer movement from the ground up to catalyse efforts in the space; working with the Chan Zuckerberg Initiative to lift up rare disease patient-led research networks; and working with WHO developing strategies to manage COVID 19 infodemic through effective community engagement.
Dr Sandra del Pino, PhDAdvisor on Cultural Diversity, Pan American Health Organization - PAHO/WHO
Sandra del Pino has more than 15 years of international experience in areas related to health, human rights, and development. She joined the UN system in Geneva, at the Office of the High Commissioner for Human Rights in 2006. For four years, she managed different programs and portfolios that demanded sensitive negotiations with authorities, as well as high-level interventions in several countries. In 2010 she joined the Western Pacific Regional Office of the World Health Organization (WPRO) in Manila as the Technical Officer on Equity, Gender and Human Rights. Since 2011, she has been working at the Pan American Health Organization (PAHO), providing technical cooperation on health equity and addressing gender and ethnic inequalities in health. In 2015, she was appointed Cultural Diversity Advisor at PAHO for the Americas. She is responsible for the management of the ethnicity program at PAHO, the only regional WHO office that has this mandate. She led the successful negotiation of the first Policy on Ethnicity and Health, which to date, is the only such policy worldwide. Sandra holds a Law Degree and has specialized in International Law and Peaceful resolution of conflicts. She also holds a Master degree in Translation from the University of Geneva, and a PhD in Health Sciences.
Dr Antoni Dedeu, MDSenior Advisor on Integrated Primary Health Care, European Centre for Primary Health Care, World Health Organization
Dr Dedeu is the WHO Senior Advisor of the WHO European Centre for Primary Health Care in Almaty, Kazakhstan. He is the former Interim CEO of the International Foundation for Integrated Care (IFIC) based in Oxford, UK and served as Director the Agency for Health Quality and Assessment of Catalonia (AQuAS), Spain. Dr Dedeu is a MD, specialised in Urology and Family Medicine and he holds MScs in Health Economics, in Primary Care and Community Care and in Healthcare Management. He has professional experience spanning more than 25 years at international level in the fields, health systems development and primary care. He has worked as policy maker, manager, researcher and implementer on health system reforms. Former Chair of EUREGHA (European Association of Regional and Local Authorities). He has also been the Director of research and knowledge exchange of the Digital Health and Social Care Institute of Scotland, in association with the University of Edinburgh, United Kingdom.
Dr Dedeu has been involved as PI in more than ten EU projects. Along with his scientific career he has published more than 55 research papers in SCI and SCIE journals of high impact factor. He has been a Urologist and a Family Medicine physician leading multidisciplinary teams and is an advocate of primary health care, integrated care, and digital health care.
Fabio GonzálezPresident, Chilean Foundation of Skin Diseases
Fabio is president of a group of patients started in 2007, such as Psoriasis Chile, changing the name in 2022, with the purpose of integrating other pathologies to the skin