Este evento virtual de dos días de duración contó con sesiones educativas, una sesión plenaria, un evento destacado y debates con las principales partes interesadas* que se centraron en temas relacionados con la promoción de la atención y el acceso al tratamiento.

Coloque el cursor sobre las sesiones del cuadro del programa y haga clic en ‘MÁS INFORMACIÓN’ para ver las descripciones de las sesiones.

Día 1 | 8 septiembre:   MANTENIMIENTO Y PROMOCIÓN DEL TRATAMIENTO

8:15 AM - 9:00 AM

SESIÓN PLENARIA
Panorama actual del acceso al tratamiento y la atención a nivel mundial

9:00 AM - 10:00 AM

SESIÓN EDUCATIVA
Estrategias efectivas para mejorar el acceso al tratamiento y la atención

10:00 AM - 10:15 AM

INTERVALO
Advocacy case presentations

10:15 AM - 11:15 AM

SESIÓN EDUCATIVA
Modelos de atención actual y en un mundo pospandémico

11:15 AM - 11:45 AM

INTERVALO
Advocacy case presentations

11:45 AM - 1:00 PM

DEBATES CON PARTES INTERESADAS
*Solo con invitación

 

Día 2 | 9 septiembre:   ACCESO AL TRATAMIENTO Y ADQUISICIÓN

8:30 AM - 9:15 AM

SESIÓN EDUCATIVA
Colaboración para ampliar el acceso (panel)

9:15 AM - 10:00 AM

SESIÓN DESTACADA DE LA FMH
Academia de Cabildeo del Programa PACT

10:00 AM - 10:15 AM

INTERVALO
Advocacy case presentations

10:15 AM - 11:15 AM

SESIÓN EDUCATIVA
Economía de la atención y acceso a tratamientos

11:15 AM - 12:15 PM

SESIÓN EDUCATIVA
Modelos de adquisición

12:15 PM - 12:45 PM

SESIÓN PLENARIA
Recomendaciones y conclusiones principales de la cumbre

SOLO CON INVITACIÓN
INTERPRETACIÓN SIMULTÁNEA DISPONIBLE EN ESPAÑOL, FRANCÉS, RUSO Y ÁRABE
TODOS LOS HORARIOS SE INDICAN EN EL HORARIO DE VERANO DEL ESTE DE NORTEAMÉRICA (EDT)
EL PROGRAMA ESTÁ SUJETO A CAMBIOS

 

SESIÓN PLENARIA

Panorama actual del acceso al tratamiento y la atención a nivel mundial


How is the pandemic impacting global healthcare systems around the world? What will the “new normal” be? In this opening session, Cesar Garrido (WFH) and Dr. Glenn Pierce (WFH) will address the effects of the pandemic on WFH’s vision of Treatment for All, as well as highlight the current state of access to treatment and care. Keynote speaker Dr. Mariângela Simão (WHO) will also discuss the impact of the Universal Health Coverage priorities and Sustainable Development Goals on access to care for people with inherited bleeding disorders. Join us to find out what role must patient organizations, healthcare professionals and governments play in improving access to care.

Chair
Alain Baumann, CEO, World Federation of Hemophilia, Montreal, Canada

Opening and welcome remarks
Cesar Garrido, President, World Federation of Hemophilia, Caracas, Venezuela

WHO Keynote Address
Mariângela Batista Galvão Simão, Assistant Director - General Access to Medicines and Health Products, World Health Organization, Geneva, Switzerland

Current state of access globally: The new normal
Glenn Pierce, Vice-President Medical, World Federation of Hemophilia, San Diego, United States

SESIÓN EDUCATIVA:

Estrategias efectivas para mejorar el acceso al tratamiento y la atención


In this session, speakers will address the importance of data analysis to inform policy decisions, building alliances with patient groups and other effective strategies to improve access to treatment and care for people with bleeding disorders. Emphasis will be made on patient organization’s key contributions and expertise in integration of bleeding disorders within national health systems.

Chair
Dawn Rotellini, Chief Operating Officer, National Hemophilia Foundation, United States

Effective strategies to improve access
Bradley Rayner, National Chairperson, South African Haemophilia Foundation, Cape Town, South Africa

Data analysis to inform policy decisions
Declan Noone, President of the European Haemophilia Consortium, Dublin, Ireland

Building alliances to improve access to care and treatment: Strategies towards success
Durhane Wong-Rieger, President and CEO, Canadian Organization for Rare Disorders, Toronto, Canada

SESIÓN EDUCATIVA:

Modelos de atención actual y en un mundo pospandémico


The pandemic has brought many challenges to the existing models of organization and delivery of care. This session highlights the opportunities that also arise in the post-pandemic era. Presenters will share different case studies from around the world that led to improved access to care for people with bleeding disorders during these difficult times.

Chair
Dan Hart, Chair, WFH HTC Twinning Committee, United Kingdom

Organization and delivery of care
Margareth Ozelo, Professor, Hemocentro Unicamp, University of Campinas, Brazil

New opportunities and challenges - What can care delivery look like in post-pandemic world
Hatoon Mohammed, Director of blood disorders program, MOH, Johns Hopkins Aramco Healthcare, Dhahran, Saudi Arabia

Positive changes: Making temporary gains permanent
Daniel Anibal Garcia, President, Federación Española de Hemofilia – FEDHEMO, Madrid, Spain
- presenting in Spanish

SESIÓN EDUCATIVA:

Colaboración para ampliar el acceso (panel)


WFH VP Medical, Dr. Glenn Pierce, will moderate a panel discussion bringing together perspectives from a patient organization leader, a healthcare provider and a national government representative. This discussion will highlight potential areas of collaboration between stakeholders and identify the advantages of capitalizing on each other’s expertise. Speakers will share the lessons learned from their respective experiences in Nigeria, Tunisia, and Morocco.

Moderator
Glenn Pierce, Vice-President Medical, World Federation of Hemophilia, San Diego, United States

Panelists
Megan Adediran, Executive Director, Haemophilia Foundation of Nigeria, Kaduna, Nigeria

Emna Gouider, Hematologist, Aziza Othmana Hospital, Tunis, Tunisia

Latifa Belakhel, Chef de Division des Maladies Non Transmissibles, Direction de l'Epidémiologie et de Lutte contre les Maladies, Ministère de la Santé, Rabat, Morocco

SESIÓN DESTACADA DE LA FMH

Academia de Cabildeo del Programa PACT


This session will present an overview of the WFH’s Path to Access to Care and Treatment (PACT) Program and launch the new PACT Advocacy Academy – an 8-month training course for NMO leaders and advocates developed by the WFH in partnership with the New York University Robert F. Wagner Graduate School of Public Service.

Welcome and Introductions
Donna Coffin, Director - Research & Education, World Federation of Hemophilia, Montreal, Canada

PACT Program and Advocacy Academy
Salome Mekhuzla, Director - Global Development, World Federation of Hemophilia, Montreal, Canada

Importance of the Advocacy Academy for NMOs
Carlos Safadi Marquez, Vice-president - NMO, World Federation of Hemophilia, Buenos Aires, Argentina

Collaboration between WFH & NYU Wagner
John Gershman, Clinical Professor of Public Service; Co-Director of Capstone Program, New York University Robert F. Wagner Graduate School of Public Service, New York

Course content and design
Mathieu Jackson, President, CHS Quebec Chapter, Montreal, Canada

SESIÓN EDUCATIVA:

Economía de la atención y acceso a tratamientos


This session will present an overview of the current state of access to therapies for people with bleeding disorders. Speakers will also highlight the importance of patient-relevant data on treatment choices and health policy decision-making. Session will include a case study and concrete recommendations will be brought forward for patient organizations to advocate for increased access to therapies.

Chair
Dawn Rotellini, Chief Operating Officer, National Hemophilia Foundation, United States

Access to therapies in different resource-settings / What does the data tell us
Mark Skinner, President/CEO, Institute for Policy Advancement Ltd, Washington DC, United States

Making evidence-based decisions on reimbursement policies
Jamie O'Hara, CEO, HCD Economics, Cheshire, United Kingdom

Advocating for access to a novel therapy: A Canadian case study
David Page, Director of Health Policy, Canadian Hemophilia Society, Quebec City, Canada

SESIÓN EDUCATIVA:

Modelos de adquisición


This session aims to give an overview of various procurement models for hemophilia and other inherited bleeding disorders therapeutic products, present key principles in setting up an efficient national procurement mechanism and highlight the importance of multi-stakeholder involvement in decision-making. Case studies from Russia, Ireland and Central America will be presented to offer insight on patient organization, government, and regional procurement agency perspectives.

Chair
Mukesh Garodia, President, Hemophilia Federation (India), Guwahati, India

Procurement of therapeutic products for bleeding disorders
Brian O'Mahony, CEO, Irish Haemophilia Society, Dublin, Ireland

Patient organization perspective: Russia's experience in improving access to therapies
Yuri Zhulyov, President, Russian Hemophilia Society, Moscow, Russia

Regional procurement agency perspective
Margarita Elizabeth García Gonzalez, Technical Assistant - Medicines and Other Health Technologies Unit, Executive Secretariat of the Council of Ministers of Health of Central America and Dominican Republic (SE-COMISCA), El Salvador
- presenting in Spanish

Government perspective: Efficient procurement mechanisms
Brian Fitzgerald, Deputy CEO, Beacon Hospital, Dublin, Ireland

DEBATES CON PARTES INTERESADAS


*Solo con invitación

SESIÓN PLENARIA

Recomendaciones y conclusiones principales de la cumbre


How is the global bleeding disorders community sustaining and advancing care today and in the post-pandemic world? Which strategies have proven successful? What contributions do various stakeholders bring in achieving a more equitable access to treatment and care for people with bleeding disorders globally? Join us as we closes the Global Policy and Access Summit by presenting key recommendations and takeaways from this 2-day meeting, as well as an overview of the main takeaways from the stakeholder discussions.

Chair
Salome Mekhuzla, Director - Global Development, World Federation of Hemophilia, Montreal, Canada

Presenters
David Page, Director of Health Policy, Canadian Hemophilia Society, Quebec City, Canada

Mukesh Garodia, President, Hemophilia Federation, Guwahati, India

Antonio Gomez Cavallini, General Coordinator, Coalition of the Americas of Hemophilia, Buenos Aires, Argentina

Red de la FMH

FMH
La FMH proporciona liderazgo a escala mundial a fin de mejorar y preservar la atención para personas con trastornos de la coagulación hereditarios.
FMH USA
La FMH USA impulsa la misión mundial de la FMH en EE. UU.
Plataforma de aprendizaje electrónico
Fácil acceso a todos los recursos de la FMH sobre trastornos de la coagulación.
Noticias mundiales sobre la hemofilia
Acceso a noticias de la FMH y la atención de los trastornos de la coagulación en todo el mundo.

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  • Cumbre mundial sobre políticas y acceso a tratamiento de la FMH
    1425, boul. René-Lévesque Ouest, Bureau 1200 
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    Tel.: +1 (514) 875-7944
    Fax: +1 (514) 875-8916
    Email: [email protected]

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