From Chief Regional Patient Advocate Fiona Wardman
Over the last few months, there has been an opportunity for face-to-face meetings with Member Organizations in the Asia Pacific region and South Africa. Also, there has been a lot of communication with countries in my region in the lead-up to the Global Leadership Workshop in Frankfurt, Germany.
During July, I met with doctors in Singapore to better understand HAE patient management from their perspective. We also discussed the plans to hold a patient meeting later in the year.
While in Singapore, I met Takeda’s local and regional teams to discuss plans for access to treatments in the countries in my region. I presented my journey from patient to advocate to approximately 50 people in person and over 100 online in the Takeda office. Also, I took the opportunity to meet with the CSL Behring representative in Singapore to discuss the plans for accessing treatments and with Rainbows Across Borders to discuss support for HAE Singapore at a local level with the Ministry of Health.
It was also my pleasure to meet with patient Yong Hao Lim to discuss his HAE journey. I would like to welcome Yong Hao to our HAEi family and as the new National Contact for Singapore.
I met with HAE Korea in August to re-establish plans and collaboration with HAEi. We had a full-day meeting with four people from HAE Korea to discuss their plans. We talked about how HAEi can assist with tools and resources, increase awareness and education amongst patients, physicians, and the community, gain access to more treatment options, and interact with more pharmaceutical companies.
While in Seoul, I met with the local Takeda team to discuss plans regarding treatment reimbursement. I also had the pleasure of meeting with Dr. Kang to discuss possible ways of increasing awareness of HAE amongst medical professionals.
Online, I have met with a local pharmaceutical company in India and HAE India to discuss plans for C1-Inhibitor for patients in India.
In September, I traveled to South Africa to meet with the HAE team there. We held productive meetings planning their growth and projects – no doubt meeting face-to-face gave us the opportunity for in-depth discussions. The HAE South Africa team and I also met with Dr. Jonny Peter, Dr. Mike Levin, and other doctors with HAE patients. Furthermore, we met with the local Takeda team and BioCryst (online) to discuss the plans for their modern therapies.
