When you go to a WFH World Congress, you go with your mind, heart and eyes open. It was my distinct privilege to be able to attend the WFH 2024 World Congress and also have the great fortune of having attended others before. Each World Congress that I have attended has been different to the one before – not only because our treatments or landscapes have been different, but it is also likely that I have been different.
My first congress was in Paris, France. I was representing my provincial chapter. I was unprepared, felt a little lost, nearly went missing and no one would have noticed! But I was captivated, and awe struck. It was with fresh eyes that I saw what the community faced in the bleeding disorder world. My world was just my son at that time. I pondered and felt there was so much work to do. My heart broke, but it still housed hope.
My second congress was in Melbourne, Australia – again representing my provincial chapter. This time I was better prepared; I brought a chaperone, so I didn’t go missing. I remember feeling the same as I did in Paris, but this time I listened more, and became a better student of life. Between Paris and Melbourne, I joined the CHS Committee for the Bangladesh Twinning, and got the opportunity to meet my partners. I knew I had grown.
Wendy, then CHS President, welcoming the global bleeding disorder community at the WFH 2022 World Congress in Montréal.
These congresses were followed by Scotland in 2018 and eventually Montréal in 2022 where I was representing the national level of the CHS. This was a very special congress as it opened us back up to in-person meetings, and our community coming together. Gene therapy was the most talked about topic in both these congresses, giving us incredible opportunity and hope. My son joined me in Montréal which was a great gift for me.
This takes me to Madrid, Spain – a wonderful WFH World Congress it was. Prior to the congress’ official opening I had the incredible opportunity of attending the global national member organization (GNMO) training as Canada’s representative. I met NMO representatives from so many different levels of function and stages. Despite our different backgrounds and stages of development, we listened and learned. I learned and I taught in my circle, and felt that I had come full circle in this bleeding disorder community. I felt so grateful to the country I live in and represent, but also mindful of disparities.
The global national member organization training.
The WFH 2024 World Congress that followed had me finding all my GNMO training partners and holding space for them as they experienced congress from their own perspectives. There was much in common – members advocating for better treatments and comprehensive care no matter what part of the world they were from. I was touched by the WFH Humanitarian Aid Program and also the WFH Cornerstone Initiative that have made it possible for some of our underdeveloped countries to have access to emicizumab for example.
Lastly, the most profound element of this congress was the attention given to women and bleeding disorders. The focus was noticeable, and there is such an indication that there is much work to be done for women who bleed. It is inspiring and fuels our future initiatives as a country and globally.
This will likely be my last WFH World Congress, as I step down from my official roles with the CHS. It has been an incredible journey and has given me the eyes and the heart to know my community a little better. I remain humbled and thankful for what we have in Canada, but always mindful that the world needs more – treatment for all is still the goal, and still, what gives us purpose and drive.
