Together Program

Hemophilia from its beginnings to the present has had a matrix centered on men because they are the ones who suffer from it the most, but in recent years this concept has been modified for various reasons, generating a more comprehensive view of the disease and including women as part of the spectrum to be analyzed.

According to information from the World Federation of Hemophilia, currently women and girls only represent 4.5% of people identified with hemophilia, and not the expected figure of 30%, given that for every male with hemophilia there are 1.6 symptomatic carriers. About one in five women with heavy menstrual flow has an underlying bleeding disorder. However, underdiagnosis of bleeding disorders remains very common, with a median delay in diagnosis of ten years for women, and four years for girls.

This reality needs to be modified with the drive to generate more active and visible roles from hemophilia patients themselves, who must be the spokesperson for each ONM and know the reality for themselves and through connection with other women in the same situation. Likewise, being a woman with hemophilia is not enough to be able to carry out some lobbying actions, generate projects and give visibility to the issue in each country; new tools and knowledge are required.

It is in this sense that we, from the Coalition of the Americas, believe that it is an important challenge to carry out and that is why the Committee of Women with Hemophilia and Bleeding Disorders was formed a year ago. This Committee is made up of female patients or immediate family members who have the objective of giving visibility to this problem, training women leaders in the Americas with new tools and actively participating in events where this issue is present and together with recognized leaders. This will cause each one to plan actions in their Organization and influence public health policies in each country to improve access to certain medication, prompt diagnosis, improvement of records, etc.

· Identify the successful strategies that have been developed and executed by the NHF for the visibility of the topic.

· Share ideas and compare with the realities of different countries in the Americas.

· Generate the analysis of possible successful practical experiences in various organizations and study the application in each country of residence of the leaders.

This program is supported by Hemophilia of Georgia and the National Bleeding Disorders Foundation of the United States collaborates logistically.

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