Supporters Prepare for World Hemophilia Day

Supporters Prepare for World Hemophilia Day
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From donning red gear to flooding social media, supporters are gearing up for World Hemophilia Day 2021 on April 17. The event is focused on raising awareness and understanding of the bleeding disorder that affects about one in 10,000 people globally.

Organized by the World Federation of Hemophilia (WFH), this annual event targets the general public, as well as policymakers, public authorities, industry representatives, scientists, and healthcare professionals.

In addition to calling attention to hemophilia and other bleeding disorders, World Hemophilia Day promotes the importance of taking concerted actions to achieve its overarching vision of “treatment for all”. The campaign’s theme this year is “Adapting to Change: Sustaining Care in a New World.”

“The COVID-19 pandemic has made life challenging for people with a bleeding disorder, but we can’t stop striving for Treatment for All,” Cesar Garrido, president of the WFH, said in a press release.

“World Hemophilia Day is a platform for showing the world that our community is resilient and we will overcome this new challenge as we have overcome other challenges in the past,” Garrido said.

To mark the day, which was established in 1989, the organization is offering online posters in English, French, and Spanish. A social media toolkit also is available and includes tips about raising awareness on social media, shareable images and resources. There also are #WHD2021 Facebook profile photo frames and a banner.

The WFH is launching an online video series for patients, caregivers, researchers, and healthcare professionals that’s aimed at connecting the community through stories. The videos must be a minute or less in length and may be posted on WFH social media platforms. They must answer the questions: How have you adapted to change this year? And, what does “sustaining care” mean to you?

In addition, community members are invited to share their stories and those of others. In one, Umar Khattak tells of living with hemophilia A in Pakistan. “When I and my family came to know about this mysterious disorder, then I was kept restrict from certain activities like that of traditional sports in my village,” he wrote. “I was bitterly treated in my school as having the most absent student from school. This put further pressure on me.”

As part of the World Hemophilia Day “Light It Up Red” campaign, landmarks around the world again will be aglow in red, the event’s official color. Last year, 98 landmarks were lit up to show community solidarity, a record for the initiative. In keeping with the color theme, supporters are encouraged to wear something red at home, in school, or at work and share a selfie on social media tagging #LightItUpRed and #WorldHemophiliaDay.

You may stay abreast of all WFH Hemophilia Day updates and activities on Facebook, Twitter, and LinkedIn. To buttress community efforts, the organization asks supporters to email their Hemophilia Day plans to [email protected]

“World Hemophilia Day is about bringing the global bleeding disorders community together. With the COVID-19 pandemic having a major impact on people with a bleeding disorder, that objective has never been more important,” the WFA states on a webpage. “The world has changed greatly over the last year, but one thing hasn’t: we are still in this together.”

Elsewhere, the Haemophilia Society in the U.K. is asking patients to submit stories about their journey. It also suggests that supporters wear red and participate in a virtual brunch, download a WHD2021 poster, change their social media profile photos, and join a challenge in recognition of the 36,000 U.K. residents who have a bleeding disorder.

Mary M. Chapman began her professional career at United Press International, running both print and broadcast desks. She then became a Michigan correspondent for what is now Bloomberg BNA, where she mainly covered the automotive industry plus legal, tax and regulatory issues. A member of the Automotive Press Association and one of a relatively small number of women on the car beat, Chapman has discussed the automotive industry multiple times of National Public Radio, and in 2014 was selected as an honorary judge at the prestigious Cobble Beach Concours d’Elegance. She has written for numerous national outlets including Time, People, Al-Jazeera America, Fortune, Daily Beast, MSN.com, Newsweek, The Detroit News and Detroit Free Press. The winner of the Society of Professional Journalists award for outstanding reporting, Chapman has had dozens of articles in The New York Times, including two on the coveted front page. She has completed a manuscript about centenarian car enthusiast Margaret Dunning, titled “Belle of the Concours.”
Total Posts: 68
Joana holds a BSc in Biology, a MSc in Evolutionary and Developmental Biology and a PhD in Biomedical Sciences from Universidade de Lisboa, Portugal. Her work has been focused on the impact of non-canonical Wnt signaling in the collective behavior of endothelial cells — cells that made up the lining of blood vessels — found in the umbilical cord of newborns.
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Mary M. Chapman began her professional career at United Press International, running both print and broadcast desks. She then became a Michigan correspondent for what is now Bloomberg BNA, where she mainly covered the automotive industry plus legal, tax and regulatory issues. A member of the Automotive Press Association and one of a relatively small number of women on the car beat, Chapman has discussed the automotive industry multiple times of National Public Radio, and in 2014 was selected as an honorary judge at the prestigious Cobble Beach Concours d’Elegance. She has written for numerous national outlets including Time, People, Al-Jazeera America, Fortune, Daily Beast, MSN.com, Newsweek, The Detroit News and Detroit Free Press. The winner of the Society of Professional Journalists award for outstanding reporting, Chapman has had dozens of articles in The New York Times, including two on the coveted front page. She has completed a manuscript about centenarian car enthusiast Margaret Dunning, titled “Belle of the Concours.”
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