Over the next several months, Alain Baumann will be hosting question & answer sessions with World Federation of Hemophilia (WFH) leaders. Today we hear the thoughts and opinions of Jan-Willem André de la Porte, WFH Patron, South Africa.
As an active member and generous supporter of the bleeding disorder community for many years, Jan-Willem André de la Porte was invited in 2001 to become WFH Patron.
How did you get involved with the World Federation of Hemophilia (WFH)?
As a person with hemophilia, I was very much involved with efforts to support the hemophilia community in South Africa. Through my affiliation with the South African Haemophilia Foundation, I became involved with the WFH at the local level. During WFH 1994 World Congress in Mexico City, Mexico, I was asked to run for president of the WFH. While I did not become president, I continued my long-standing involvement with the WFH.
What makes you proud to be part of the WFH?
I’m very proud to see the results we’ve been able to achieve. Specifically, that the WFH provides treatment to many people who did not have access to treatment before now.
What do you think is the main impact the WFH has had in recent years?
Main impact the WFH has had recently is being able to provide a huge amount of product donations to people in need. Another way we have been able to make a difference is in facilitating the setup of local organizations in many countries for the first time.
What is the main impact you hope the WFH will have in the future?
I hope that in the future, the WFH will be able to find more people with hemophilia in order to further the vision of Treatment for All. I also hope that we will continue working towards a cure for hemophilia.
What do you think is one area where the WFH could improve?
I think we could be better at sharing local knowledge, with local people, in different countries or regions. I think we could also continue to improve in finding ways to get donated factor treatment products to remote or underserved areas.
Next to your involvement with the WFH Board, what is your personal involvement in the bleeding disorders community in your country or region?
When I comes to my personal involvement in the bleeding disorders community in my country, I really do put all of my effort into the work I do with the WFH.
If you had $1 million to donate to the bleeding disorders community, where would you like to see your donation go?
I would put the $1 million towards making life better for young people with hemophilia, especially in countries where getting proper treatment is a challenge.
To read about how other WFH leaders answered these questions, please click here.