Collaborating and communicating to impact care
Teamwork and dialogue are powerful tools for building a strong haemophilia community. This philosophy has helped Engels Reyes, who lives with severe haemophilia A, to become increasingly involved as a spokesman for bleeding disorders in Nicaragua and beyond.
“I have learned to always listen to my community to understand the particular needs of our health system and how it works so that I can make suggestions, always in a spirit of dialogue and respect for the institutions,” says Mr Reyes, who is President of the Nicaragua Haemophilia Association and responsible for the second project supported by the Novo Nordisk Haemophilia Foundation in the country.
The NNHF project team made good progress in 2020 towards their objectives of increasing knowledge among healthcare professionals and empowering people with haemophilia and their families. Given the relatively low rate of infection with COVID-19 throughout the year, they were able to combine face-to-face and virtual training as well as personal phone sessions for people without internet access.
Raising awareness and sharing learnings
A total of 20 healthcare professionals participated in a training session held in the capital Managua on Rare Disease Day at the end of February 2020. This was followed by an empowerment workshop for people with haemophilia and their families on integration in schools, and several meetings with healthcare authorities in Matagalpa. In addition, the group successfully leveraged the media to raise awareness of bleeding disorders through the press, radio reports and television interviews. Digital content was developed and shared via the patient organisation’s Facebook and WhatsApp channels.
The second NNHF project in Nicaragua also integrates activities to collaborate with neighbouring countries in Central America.
“Looking beyond our own particular needs to our neighbours in Honduras, El Salvador and Guatemala, our team in Nicaragua realised that we have similar weaknesses and common elements we can develop to support each other and grow as a region,” explains Mr Reyes.
Next steps include the ongoing decentralisation of haemophilia knowledge and care in Nicaragua beyond Matagalpa to Chinandega, Bluefields and Puerto Cabezas – along with a planned 3-day workshop to share learnings with patient organisations across the region.