Sonia O’Hara


Sonia, 36, has volunteered as a trustee at the Haemophila Society for 5 years. She lives in North Wales with her family and trusty Labrador, Red. 

With a psychology degree and a Masters in Public Health, Sonia currently works as a senior real-world evidence manager developing, producing and analysing data in the field of burden-of-illness and long term outcomes of living with a genetic condition. Haemophilia is one of the rare disease areas that she works within, updating and assessing the outcomes of current and future treatment therapies for those with bleeding disorders. 

Sonia’s husband Jamie has severe haemophilia, and so she understands how living with a bleeding disorder can affect family life. Additionally, as one of the couple’s two children is a symptomatic carrier of haemophilia, Sonia has necessarily found out more about females with bleeding disorders and is passionate about raising awareness that females can be affected too. It is Sonia’s belief that care pathways for females with bleeding disorders are in need of great advancement, which will only progress with the utility of multi-stakeholder framework approaches.

Sonia says, “My personal and work background have combined to inspire me to want to help campaign for access to better treatments and therapies for anyone affected by a bleeding disorder, attaining equality and equity for all, regardless of location, age or gender.” 

When she has any time to spare, Sonia loves to take long walks with her family and dog Red.