Free Online Program to Train Global Advocates for Bleeding Disorders

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by Mary Chapman |

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An online academic training program has been launched globally for people interested advocating for bleeding disorders care and treatment in their respective countries, as part of a partnership between the World Federation of Hemophilia (WFH) and the New York University (NYU) Robert F. Wagner Graduate School of Public Service.

Called the PACT Advocacy Academy, the free eight-month program for WFH national member advocates begins in February. Applications are accepted until Oct. 31 and the selected 20 to 30 participants will be notified between Nov. 15 and Dec. 15.

For the first year of the five-year initiative, courses will be taught in English, with plans to incorporate other languages in 2023. The classes will be led by experts in advocacy and bleeding disorders. Course graduates will receive an executive training certificate from the WFH and NYU.

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The courses will focus on four main areas, including introducing key concepts in bleeding disorders, such as hemophilia, as well as principles of care and advocacy; addressing treatments, procurement models, and tenders; discussing health economics and health technology assessment; and promoting advocacy skills and campaign design.

The academy’s goal is to enable course graduates to be able to easily converse about foundational concepts and principles of care in bleeding disorders and be familiar with the basics of procurement models. By the end of the program, graduates must also have gained a fundamental understanding of health economics concepts related to care and treatment access, and be familiar with the core elements of advocacy campaign design.

Additionally, graduates must also be able to identify the main stakeholders in their country who are involved in care and treatment access policies.

The training program is part of the new WFH Path to Access to Care and Treatment (PACT) Program, which seeks to improve outreach and diagnosis among those with inherited bleeding disorders, and heighten access to sustainable care. The organization hopes to achieve this through evidence-based advocacy, as well as training, education, partnerships, and initiatives in member countries.

“People in bleeding disorders communities face a number of challenges getting access to proper care in many countries around the world,” the WFH stated about the PACT Program. “For example, the gap between observed versus expected people with hemophilia is even greater than it was estimated in the past, with only one-third of the expected number of people with hemophilia having been identified globally so far.”

“Also, the COVID-19 pandemic put significant strain on public health systems and increased the need to maintain constructive dialogue with national governments to ensure that bleeding disorders care is sustained and further advanced,” added the nonprofit organization.

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In addition to online education and training, which includes annual virtual sessions for healthcare professionals focused on patient outreach and disease diagnosis and management, PACT components comprise tailored, need-based national access plans that provide personalized training and practical support for outreach and advocacy campaigns in specific countries.

It also includes a call for potential mentors — as the WFH is looking for volunteer experts to serve as PACT program mentors for target countries — as well as global and regional meetings.

PACT goals include identifying, over the course of five years, new people with bleeding disorders, improving care access, and increasing government support to establish or expand current national care programs.