Every year, the community demonstrates inspiring solidarity on World Hemophilia Day. From the WFH perspective, we were impressed by the courage and strength that were present in full force in the many stories that were shared on our World Hemophilia Day story site. Here are quotes from two stories that we felt stood out.
“Growing up was challenging, as I had to constantly worry about when my next bleed was going to occur… Thanks to the advancement of treatment and care in Malaysia, I benefited from prophylaxis treatment from age 22 onwards which significantly reduced my bleeding episodes, and now I am able to lead a healthy and an active lifestyle.”
—Hazri Aris, Malaysia
“…I live each day positively and with the courage to face the uncertainties and complications caused by hemophilia and my co-infection. I have seen life as not as simple as others have; the challenges I faced have given me the resolve to not only help myself but also others.”
—Masood Fareed Malik, Pakistan
“I am the third generation with [von Willebrand disease], I always thought it was normal to have anemia and heavy bleeding during my period… [but now I realize] that there are [medical] options for people with my condition. I thank everyone who has helped me on this path… and who taught me that it is possible to have a good quality of life despite the bleeding.”
—Génesis Cedeño, Venezuela
It was heartening to see how the World Hemophilia Day theme and resources were adapted to reflect the conversations happening around access to care in different communities around the world. Our website—where the community was able to access advocacy and celebratory resources available in English, French, and Spanish—had over 24,000 visits. Our social media posts were viewed over 22,000 times. All of this is proof of how engaged our community is as a family.
On behalf of the WFH and everyone in the bleeding disorders community, thank you for your support on World Hemophilia Day. To learn more about this important event for the bleeding disorders community, please click here.
The WFH would like to thank our 2023 World Hemophilia Day sponsors for their continued support: Bayer, BioMarin Pharmaceutical Inc., Biotest, CSL Behring, F. Hoffman-La Roche Ltd., Freeline Therapeutics, GC Pharma, Grifols, Kedrion, LFB S.A, Novo Nordisk, Octapharma, Pfizer, Sanofi, Sobi, Spark Therapeutics, and Takeda.