CoA Lobbying Academy

In the American continent, the treatment of hemophilia and other rare bleeding disorders has improved over the years, due to the introduction of our therapies, the actions of each Patient Organization, such as patient registration, advocacy by leaders, empowerment of patients and families, and to end lobbying by improving access to timely diagnosis and innovative therapies.

Now, these actions are not isolated, the region influences the development or decrease of the health system focused on hemophilia and other coagulation disorders. We know that there is a significant inequity in the comparison between various countries in their access and treatment, it is therefore necessary to have a baseline
for all patient organizations and thus be able to identify and strengthen each of them, focusing on those that have the least access.

It is then that, based on the comprehensive analysis of the status of the patient organizations, we propose to generate work focused on 4 countries, where guided work will be generated on actions that improve the depth of knowledge of hemophilia, coagulopathies. , advocacy, lobbying, which will allow for results in the short and medium term.

Proposed axes
It is expected to be able to provide technical monitoring and advice on three central axes in order to improve and improve the knowledge base line of the selected ONMs, detailed:

Priority planning: this topic will be important to be able to provide you with a conceptual framework based on your needs and plan actions that allow you to achieve your goals and objectives.

Patient Registry: be the government’s strategic partner to maximize the visibility of Hemophilia and other coagulopathies in your country. Use available tools that allow it to be a living document with relevant information to support patient access.

Access to innovative therapies: provide technical tools for the professionalization of leaders, reinforcing knowledge about diseases and their updated treatments. Improve knowledge about health systems, purchasing methodologies and approvals of new therapies in the country.

Advocay and Lobbying: provide technical tools (knowledge of the pathology) and communication that allow them to transmit an optimal message to decision makers “Lobbying and Advocacy”.

More Details in Spanish in the attached PDF