Argentina 3, Jujuy project
Outreach to patients with haemophilia in the province of Jujuy
Partner institution
Fundación Jujeña de Hemofilia, San Salvador de Jujuy
Represented by
Dr Susana Gastaldo, President
Duration
1 year, Q4 2016 – Q1 2018
Status
Completed
Objectives
- Identify new people with haemophilia and improve diagnosis infrastructure
- Improve access to care for people with haemophilia in the province of Jujuy
- Improve the quality of life for people with haemophilia by establishing self-treatment processes and educating the social environment
Achievements
- 174 HCPs and 300 nursing school students trained
- 7 new patients diagnosed, 40 women identified with FVIII level <35%, 40 patients re-diagnosed
- 40 patients and 180 family members educated and evaluated
- Awareness raised at public events, media and in schools
- Facebook information page created
- Created Excel registry and mapped the patients
- Access to basic care reduced by 2-7 hours of travel
Planting the seeds of progress
Buenos Aires has well-established haemophilia care where people with bleeding disorders are able to flourish. But Jujuy presented a very different landscape. In the province of Jujuy, people with haemophilia were often completely isolated from care. In many cases, they had not even been properly diagnosed and were living in an environment without any resources or support.
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