Ursula Porage Dona: How Data Can Strengthen Advocacy for Better Patient Outcomes
Ursula Porage Dona, Program Manager at Novo Nordisk Haemophilia and Haemoglobinopathies Foundation, shared Novo Nordisk Haemophilia and Haemoglobinopathies Foundation’s post on LinkedIn:
“Was great to be part of an insightful discussion on how data can strengthen advocacy efforts and improve outcomes for people living with bleeding disorders and haemoglobinopathies.
Thank you to everyone who joined us.”
Novo Nordisk Haemophilia and Haemoglobinopathies Foundation shared a post on LinkedIn:
“How can data help you achieve your advocacy goals?
At our Online Partner Highlights Meeting, partners from across the Novo Nordisk Haemophilia and Haemoglobinopathies Foundation (NNHF) explored how data-driven advocacy can help make local realities visible, strengthen the case for more sustainable care and support action for haemophilia and haemoglobinopathies.
Two NNHF-supported activities brought this into focus:
Kenya and Uganda
Dr. Richard Sanya, African Population and Health Research Center (APHRC), shared insights on the economic and health burden of haemophilia across households, health systems and society
India
Dr. M Joseph John, Christian Medical College Ludhiana, presented the STEWARD study, highlighting how cost-of-illness, quality-of-life and financial protection data can support advocacy and policy dialogue.
A warm thank you to our speakers and to all partners who joined online and contributed to an interactive exchange.
The images capture just a few of the many participants who joined the call, which brought together more than 70 people from across NNHF’s global community.
Curious how our programmes are strengthening care through local partnerships and data-driven advocacy?
Find out more.”

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