It was uplifting to see how the enthusiasm of World Hemophilia Day percolated around the world in person and online. Over 150 monuments took part in the “Light it up Red” campaign, and countless gatherings were held around the world. Our story site—where anyone can share a story or a video about their experience with hemophilia—saw entries being uploaded all day long. Our social media posts on Facebook, Twitter, LinkedIn and Instagram were viewed over 43,000 times—nearly double our numbers from last year.
While it’s hard to single out stories from the many submissions we received on the World Hemophilia Day story site, here are three that we would like to share with you. We’ve taken out excerpts from the stories—if you want to read the full text, please click on the link.
 | Maryam Waleed Mahdi Mother of a son with severe hemophilia A “Navigating life with a child with hemophilia is an ongoing learning experience, but being part of a supportive community has made all the difference. We’ve learned to celebrate small victories, cherish resilient smiles, and find strength in unity. As we embrace the advancements in medical care and share our collective wisdom, we continue to move forward with courage and optimism. To all the mothers out there facing the challenges of hemophilia, know that you are not alone. Your strength is commendable, and I am proud to stand beside you. Together, we celebrate our children’s resilience and the hope that comes with each new day, proving that life can be lived with courage and joy even in the face of hemophilia.” To read Maryam Waleed Mahdi’s full story, please click here. |
 | Eliza VanZweden Person with Glanzmann’s thrombasthenia “My name is Eliza VanZweden, and I am writing to share my journey as a woman living with Glanzmann’s Thrombasthenia. GT is a rare bleeding disorder caused by a platelet defect in which platelets do not aggregate to stop bleeding. Although I still struggle with knowing when to get treatment for severe bleeds and don’t have access to prophylaxis treatment, preventative care has still been key in managing my bleeding disorder. This involves minimizing my risks in every activity or environment and being prepared for every situation. The bleeding disorders community I have come to know through the WFH and the National Bleeding Disorders Foundation (NBDF) in the United States has proved to be an invaluable support and resource. I have met others who have the same bleeding disorder as I have and am inspired to be an advocate for this community <3.” To read Eliza VanZweden’s full story, please click here. |
 | Phyo Khant Kyaw Person with hemophilia B “In 1998, I was faced with the harsh reality of my condition when a simple injury to my gum led to a diagnosis that changed my life forever. At that time, diagnosing factor deficiency in Myanmar was a challenge, and I had been on a journey over thousand blood transfusions. One of the most harrowing moments of my journey was experiencing an intracranial hemorrhage during my childhood. I was engulfed by fear, unable to speak, and unable to see the light. However, care and treatment provided by Professor Aye Aye Khaing, I got recovery within two weeks. I am immensely grateful to the World Federation of Hemophilia (WFH), for saving my life and the lives of countless others affected by this condition. Through their initiatives and advocacy, individuals like myself have been given a chance at life, hope, and a brighter future.” To read Phyo Khant Kyaw’s full story, please click here. |
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 2024 World Hemophilia Day sponsors for their continued support: Bayer, BioMarin Pharmaceutical Inc., Biotest, CSL Behring, F. Hoffman-La Roche Ltd., GC Pharma, Grifols, Kedrion, LFB S.A, Novo Nordisk, Octapharma, Pfizer, Sanofi, Sobi, Spark Therapeutics, and Takeda.