Regional Patient Advocates (RPAs)

Fernanda Martins has served as HAEi’s Regional Patient Advocate for South America and Mexico since 2018. She has been an active member of the Brazilian HAE association since 2005. Fernanda is the daughter and sister of patients with HAE and therefore understands the overall burden associated with the condition. Fernanda has a degree in Biology and Nutrition and a master’s degree in public health. In addition to working at HAEi, Fernanda works as a “scientific advocate” in the Latin American food industry.

Javier Santana serves as HAEi’s Regional Patient Advocate for Central America and Caribbean. He started at HAEi in 2017 as a representative of the Latin American region. He continues helping existing organizations grow and facilitating the formation of patient groups where none exist. Javier applies his 20 years of communications and government affairs experience in helping Member Organizations mount effective advocacy campaigns that force health ministries to provide access to life saving HAE medicines.

Anthony J. Castaldo is HAEi’s Chief Executive Officer and Chairman of the Board. He is a founding Board member and has led HAEi since its 2004 registration as a non-profit organization. He is also a founding Board Member and CEO of the US Hereditary Angioedema Association (HAEA) – an HAEi Member Organization with 8,000 members. Tony served as Associate Inspector General at the United States Federal Reserve until his retirement in 2013. He is a co-author of over 20 HAE-related medical journal papers and is frequently invited to speak on HAE and rare diseases.

Fiona Wardman is HAEi’s Executive Vice President of Global Advocacy and Chief Diversity Officer. Fiona joined the Board in 2014 and serves as HAEi’s Treasurer. She leads the global advocacy team and oversees day-to-day efforts to help Member Organizations raise awareness and advocate for access to and reimbursement for modern HAE therapies. Fiona is also the Regional Patient Advocate for South Africa and several countries in the Asia Pacific region. She co-founded the Australasian HAE organization in 2011. Prior to joining the HAEi team, Fiona held managerial positions in a variety of companies and industries.

Michal Rutkowski serves as the HAEi’s Vice President of the Board and Director, Regional Patient Advocate Program. Michal is responsible for guiding, managing, and implementing the strategic direction of HAEi’s Regional Patient Advocate Program. He works closely with HAEi’s Executive Vice President of Global Advocacy, and Coordinator, Global Advocacy and ACARE. Michal is also the Regional Patient Advocate for Central Eastern Europe and Middle East. He founded HAE Poland in 2005 and continues to serve as its President. In addition to fulfilling his HAEi responsibilities, Michal remains active in his architectural profession.

Natasa Angjeleska serves as the Regional Patient Advocate for HAEi in South Eastern Europe. She focuses her efforts on raising public awareness for HAE and educating patients and medical staff about HAE in South Eastern European countries. Natasa is an active member of the North Macedonia HAE organization and focuses her advocacy activities on improving the quality of life for patients in all areas: Health, education, employment, and social services. Her professional experience includes working on education and children’s rights. In addition, Natasa is assistant professor at a private university in North Macedonia’s capitol city, Skopje.

Patricia Karani is the Regional Patient Advocate for Sub-Sahara Africa and the President of HAE Kenya. Patricia was appointed as Regional Patient Advocate in 2017. Her advocacy efforts include facilitating the sharing of ideas and knowledge amongst HAE patients, doctors, and other health care professionals throughout Sub Sahara Africa. Before joining HAEi, Patricia held a position of Human Resource Manager and Personal Assistant to the managing director of a large local corporation with over 100 employees nationwide.

Jørn Schultz-Boysen serves as HAEi’s Executive Vice President Global Operations and Chief Compliance Officer and is responsible for day-to-day operational, managerial, and financial matters. Jørn joined the Board in 2012 and has also served as HAEi’s Executive Project Manager. He is a co-founder of HAE Scandinavia where he serves as the Vice President. Jørn is also the Regional Patient Advocate for the Nordics, Germany, Austria, Switzerland, and Israel. Before joining HAEi, he held executive-level positions in a variety of companies with global operations.

Maria Ferron joined HAEi in 2016 as the Regional Patient Advocate representing the Mediterranean and North African countries, Benelux, and British Isles. Maria has been a member of the Spanish HAE organization since its 1999 inception and became its secretary in 2018. Maria holds a Master´s in Finance, and currently works in an accounting, labor, and legal management firm.

Yong Hao Lim is HAEi’s Regional Patient Advocate for the Eastern Asia region and also serves as the National Contact for HAE Singapore. He focuses on fostering the growth of Member Organizations and support networks within the region by raising HAE awareness and improving accessibility to modern treatments. Based in Singapore, Yong Hao has more than a decade of experience in applied social and behavioral research, as well as data analytics, in the health promotion and public healthcare fields.

Henrik Balle Boysen serves as the President and Board Member of HAE International (HAEi), US Hereditary Angioedema Association (HAEA), and HAE Scandinavia. He was appointed as HAEi’s Executive Director in 2009 after serving four years as a member of the Executive Committee. Henrik is responsible for planning and executing HAEi’s strategic and operational direction and guiding the leadership team as they implement the organization’s programs, services, and activities. Before joining HAEi, Henrik held several executive-level positions in global corporations. He is a co-author of several HAE-related medical journal papers and is frequently invited to speak on HAE and advocacy.