August 30th, 2016
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Throughout the last years, I’ve been strengthening my efforts to do my part towards a better future in hemophilia care – I’m on the Editorial Board of Frankly.net, I’m mentoring in the SURO Program, and I’m active in the German Hemophilia Community. This summer I had the privilege to visit my first ever WFH World Congress in Orlando. Here are my experiences and thoughts about this amazing event – I can only urge every active patient to take part in the upcoming event in Glasgow 2018!
After flying to Orlando from Europe, the week has been stressful, but exciting and not boring for one second. There are three main experiences I had:
1) Frankly.net Experiences:
Personally, I had the privilege to conduct live video interviews with two Hemophilia Advocacy Advisors Board Members about their personal experiences regarding WFH World Congress and the importance of youth leadership in hemophilia advocacy. Besides the great personal experiences for myself, I am happy to invite our readers and followers to stay tuned for the video coverage of those leading advocates in the World of Hemophilia.
2) A Future to Look Forward to:
The main component of every congress is the variety of multidisciplinary sessions in which the newest trends in hemophilia care are reported and discussed. Even without having a medical background, I’ve been able to learn a lot about the exciting new trends in our field, including longer-lasting factor concentrates, approaches to gene therapy and much more. I’m confident to say that the future for patients with hemophilia is bright and we will soon have more and more treatment options. Nevertheless, the WFH Congress has also been a great place to discuss ethical considerations and to question on how we can achieve a global treatment standard, and to achieve the WFH goal of “Treatment for All.”
3) A Global Hemophilia Family:
Throughout the days and during the social visit to the Epcot Center in Orlando, the congress has also been a great venue to network and get to know other patients and healthcare professionals from across the globe. The experiences of SURO have built my international network, and it was great to see many familiar faces at the WFH Congress in Orlando. The historical strength of the hemophilia community has always been the internal coherence and that everyone feels like being part of a big family – this feeling has been most impressive at the WFH Congress on a global scale. I hope many of our readers will have the opportunity to experience what I have at the upcoming WFH World Congress in Glasgow 2018.