Leading, advancing and empowering patient groups in Latin America
"Health issues do not touch only individuals, they are up to us all" - Dr Edgar Castañeda, Director of the Office of the High Commissioner for Human Rights, Colombia
2016 - First Latin American country-cluster event - “Leave no-one behind”
IAPO held its first Latin American countries-cluster workshop on 18-19 November 2016 in Bogota, Colombia.
40 stakeholders participated in a seminar on patient-centred Universal Health Coverage and access to Biotherapeutics. 26 patients’ organizations from Colombia, Ecuador, Panama, Peru, and Venezuela actively engaged in capacity building workshops to strengthen their advocacy skills, and receive a better understanding of patient-centredness and their role in facing the challenges and barriers to the availability, accessibility, acceptability, quality and safety of Biotherapeutics in the region.
A number of materials are available here:
Delegates’ handbook (in Spanish)
Our multi-stakeholder seminar (day 1)
Video recording of the multi-stakeholder seminar:
- Panel 1: Working together towards patient-centred universal health coverage
- Panel 2: Guaranteeing security and power of choice of patients when accessing Biotherapeutics
Presentations (in Spanish):
- IAPO introduction
- Dr. Edgar Castañeda -Director of Office of High Commissioner for Human Rights
- Antonia Luque - Asociacion Venezolana para la Hemofilia – AVH
- Luis Villalba - Director, FIFARMA
- Ricardo Garcia - Director, ClapBio
- Angela Chaves - Colombian Federation of Rare Diseases
Our workshops (day 1 & 2)
Presentations (in Spanish):
- IAPO slides day 1 and day 2
- Angela Chaves
2015 - Regional meeting - Panama City, Panama
On 24 and 25 August, IAPO held its fifth Regional Meeting in Latin America, which included a multi-stakeholder seminar and capacity building workshops.
“Equal access to essential medications is held as a universal human right” - Dr Caroline Chang Campos, ORAS-CONHU
Resources from the meeting
- Summary
- Delegate handbook (ESP)
- Press release
- Photos
- Report (coming soon)
“There are many things we can do. Don’t be afraid of doing them. We have to be persistent, and never feel defeated” - Carlos Castro Sanchez, Asociación ALE
Multi-stakeholder seminar: Innovation, Regulation and Patient-centred Healthcare
- Agenda
- Introduction: slides
- Dr Caroline Chang - Organismo Andino de Salud, Convenio Hipolito Unanue (ORAS-CONHU): Politica Andina de Medicamentos
- Hector Valle, Wellness Foundation: Invertir en salud: Países saludables como garantía de nuestro futuro
- Maria Mar Martinez, World Bank: Open innovation
- Dr José Josan: Regulación de medicamentos biológicos e intercambiabilidad
- Durhan Wong-Rieger, IAPO - Canadian Organization for Rare Disorders: Patient-Centred Healthcare: Rare Diseases and Personalized Medicines
Capacity-building workshop one: how to generate evidence to legitimate advocacy
- Agenda
- Daniel Coriat: The importance of what we do (transcript)
- Daniel Coriat: The importance of what we do (slides)
- Dr Latorre - IETS: slides 1 and slides 2
- Durhane Wong-Rieger: ETS: lo que todo paciente necesita saber
“Patient-centred healthcare benefits all in society. It makes clinical, economic and social sense to create patient-centred health systems in the Latin American Region” - Kawaldip Sehmi, CEO
Capacity-building workshop two: Biologic and Biosimilar Medicines: how can patients’ groups build their national strategy?
- Agenda
- Dr Ricardo Garcia - ClapBio: Regulación de los Medicamentos Biológicos
- Luciano Zylberberg: Medicamentos Biológicos y Biosimilares
Capacity-building workshop three: from the strategic plan to the regional action plan, Leading, Advancing, Empowering
- Agenda
- Presentations from our members:
- Pulmory Hypertension Latin Society – Migdalia Denis: video and slides
- Cystic Fibrosis patients' organizations:
- Chilean Alliance of Patient Groups: video
- Working in red – Luis Adrian Quiroz and Cintia Solano: slides
- RedTRascender – Isabel Panetta: slides
- Information on knowledge management – Gustavo Campillo: slides
- IAPO - Members working together: slides
2014 - Rio de Janeiro, Brazil
We held the fourth regional meeting for Latin America in August 2014 in Rio de Janeiro, Brazil, in order to coordinate activities with the 16th International Conference of Drug Regulatory Authorities (ICDRA). Read the meeting report.
A number of the materials are available here:
- Patient group workshop agenda and slides
- Multi-stakeholder seminar agenda and slides
- Photographs from both events are available on our Facebook page
- Press release: It's time for drug regulators and patient groups to work together