Dominican Republic 1 project
Quisqueya Project – National diagnosis, registry and educational programme
Partner institution
Fundación Apoyo al Hemofílico, Santo Domingo
Represented by
Haydée Benoit de García, Founder & President
Duration
2 years, Q2 2012 – Q2 2014
Status
Completed
Objectives
- Build capacities in the multidisciplinary team
- Train emergency personnel in hospitals where people with haemophilia go
- Improve diagnosis of people with haemophilia and other bleeding disorders
- Create a treatment guide with necessary protocols for diagnosis and treatment
- Create a registry to allow better follow up of people with haemophilia
- Systematise the education in relation to haemophilia and other bleeding disorders at the level of those affected, their families and community
Achievements
- Enhanced laboratory and trained personnel
- Registry created
- 264 people with haemophilia evaluated by the medical team and educated (85% of people with haemophilia know how to self-infuse)
- 233 people with haemophilia diagnosed and registered, 68 pending (161 haemophilia A, 46 haemophilia B, 26 other, 1 HIV, 20 HVC)
- ID cards created and distributed
- 20 volunteer for people with haemophilia empowered
- 300 healthcare professionals trained
“Most essential of all is the impact the evaluation days had towards building a stronger haemophilia community. Each person left the event with a sense of empowerment and a stronger belief in the power of a strong community. It is this expanded network that will continue to lead the way towards improved care in the Dominican Republic,” Haydée Benoit de García
“While the registry is important, it is just the beginning. A proper diagnosis is a first step towards improving care for these patients. The registry provides the basis to work with the Ministry of Health to create official policies that can impact haemophilia care across the entire country, ” Dr Rosa Nieves
