The World Federation of Hemophilia (WFH), in collaboration with the New York University (NYU) Wagner Graduate School of Public Service, launches a new academic training program for bleeding disorder advocates: The PACT Advocacy Academy

by Theleaders-Online | September 22, 2021 9:00 am

MONTREAL, Sept. 22, 2021 /PRNewswire/ — Taught exclusively online by renowned experts in the field of advocacy and bleeding disorders, this unique 8-month course will equip WFH national member organization (NMO) advocates with the knowledge and tools necessary to advocate for increased access to care and treatment in their country. Graduates of this academic course will receive an executive training certificate from the WFH and NYU.

The course focuses on four main topic areas:

1. Key concepts in bleeding disorders, principles of care and advocacy
2. Therapeutic products, procurement models, and tenders
3. Introduction to health economics and health technology assessment
4. Advocacy skills and advocacy campaign design 

The goal of the PACT Advocacy Academy is for course graduates to be able to:  

• Be conversant with foundational concepts and principles of care in bleeding disorders
• Be familiar with the basic elements of procurement models
• Have a basic understanding of health economics concepts as they relate to access to treatment and care
• Be familiar with the core elements of designing an advocacy campaign
• Identify the key stakeholders involved in access to care and treatment policies in their country
• Design an advocacy project
• Frame, brand, and communicate campaign messaging

This course will be offered in English in 2022, with plans to offer it in other languages in 2023. 

The application period opened on September 9, 2021, with the on-line course beginning in February 2022. Successful applicants will be contacted to register for the course in December 2021. For more information about the academy and how to apply, please see https://www.wfh.org/en/our-work/pact

About PACT

The new WFH Path to Access to Care and Treatment (PACT) Program is a 5-year initiative designed to improve outreach and diagnosis and increase access to sustainable care for people with inherited bleeding disorders. This will be achieved through training, education, partnerships, in-country initiatives, and evidence-based advocacy. The Program aims to:

• Identify 20,000 new people with inherited bleeding disorders
• Improve access to care through the training and education of patient leaders and healthcare providers on outreach, diagnosis, the management of bleeding disorders, and evidence-based advocacy
• Increase government support to establish or expand existing national bleeding disorders care programs

The WFH thanks our partners for the generous support of CSL Behring, Pfizer, Roche and Sanofi Genzyme, our Leadership Partners; and Biotest, Grifols and Sobi, our Collaborating Partners. To learn more about the WFH PACT Program, visit www.wfh.org/en/our-work/pact.

About the WFH

For over 50 years, the World Federation of Hemophilia (WFH)—an international not-for-profit organization—has worked to improve the lives of people with hemophilia and other inherited bleeding disorders. Established in 1963, it is a global network of patient organizations in 147 countries and has official recognition from the World Health Organization.

WFH support for the bleeding disorders community is provided by many endeavours which are making a difference in the community today, including:

• WFH healthcare development programs which are carried out in collaboration with national member organizations (NMOs) and a dedicated group of medical and lay volunteers and are based on a comprehensive development model that aims to achieve sustainable comprehensive care and “Treatment for All”
• The WFH Humanitarian Aid Program which provides a range of integrated care development training programs to ensure the local infrastructure and medical expertise in developed countries are able to use donated products in the most optimal way possible
• WFH World Bleeding Disorders Registry (WBDR), which uses data collection to advance the understanding and care of people with hemophilia worldwide. An accessible patient registry strengthens our capacity to identify, diagnose, treat, and care for people living with hemophilia and other rare inherited bleeding disorders.
• The WFH Annual Global Survey which collects basic demographic information and data on access to care and treatment products in order to provide hemophilia organizations, hemophilia treatment centres and health officials with useful information to support efforts to improve or sustain the care of people with bleeding disorders.
• The WFH eLearning Platform which features hundreds of important educational resources for users with both medical and non-medical backgrounds—in multiple languages—including guides, fact sheets, videos, articles, games, and interactive modules that are downloadable for free, and are well-suited for any learning style or area of interest.

Neha Suchak, Director, Marketing & Communications, nsuchak@wfh.org[3], +1 514-875-7944, #2857, www.wfh.org

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