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Petaling Jaya – The Hemophilia Society of Malaysia (HSM) has signed a Memorandum of Understanding (MoU) with the Asian Medical Students’ Association (AMSA) to mark the solidarity and partnership between the two organisations. At present, HSM works actively with the support from the World Federation of Hemophilia (WFH) and the pharmaceutical industry in the country in its activities such as raising awareness, community education, and sharing of information to the public.
Through this partnership, HSM aims to work with AMSA to provide awareness on treatment and care and help future doctors have a better understanding of Hemophilia and other rare bleeding disorder in the community. The partnership would also help AMSA members in their personal and professional development and serve their communities through local, regional and international events and campaigns.
Currently, there are over 1,300 people diagnosed with Hemophilia in Malaysia, whereas according to WFH, about 1 in 10,000 people are born with hemophilia. Hence, it is estimated from the 33 million population of Malaysia; there have to be around 2,100 others born with the bleeding disorder in the country to be diagnosed and given the necessary treatment and care. Among the challenges in diagnosis faced is that there are still a wide population living in the rural areas with no awareness of the bleeding disorder and limited access to a proper diagnosis, treatment and
care.
HSM and the bleeding disorder community will be celebrating World Hemophilia Day, which will fall on 17 April this year. As usual, HSM welcomes everyone from the bleeding disorder community and the general public to participate in awareness programmes planned for this year’s WHD. Further updates and information regarding the HSM can be found on HSM’s social media pages;
Website (www.hsm.org.my), Facebook (Hemophilia Society of Malaysia), Twitter (@HemophiliaMsia), and most recently, Instagram (hsm_hemophilia).
Hemophilia Society of Malaysia
About World Hemophilia Day
April 17, 2021 is World Hemophilia Day. The theme of the event this year is “Adapting to change: sustaining care in a new world”. This important event 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. Our community is made up of a great diversity of people—from patients and their families, to carers, physicians and researchers—each of whom has been affected by the pandemic in a different way. We need to continue providing support to these people now, and in the future once the pandemic has passed. The world has changed greatly over the last year, but one thing hasn’t: we are still in this together, and we will always be stronger together as a community in our shared vision of “Treatment for All”.
“The COVID-19 pandemic has made life challenging for people with a bleeding disorder—but we can’t stop striving for Treatment for All. 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.” — Cesar Garrido, WFH President
The ongoing COVID-19 pandemic means that we can’t celebrate World Hemophilia Day in person this year. But, as we have all done for most of 2020, we can adapt to the present circumstances and show the community our solidarity in other ways. For example, people wishing to participate can submit a picture of themselves wearing something red on WFH social media pages. Or, they can share their story on worldhemophiliaday.org about their experience living or caring for someone with a bleeding disorder. Participants can also tell the community about how they have been impacted by the COVID-19 pandemic. And, as always, anyone can contact a local landmark to encourage them to “Light it up Red”. There is a lot we can all do to celebrate World Hemophilia Day.
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A National Member Organisation under World Federation of Hemophilia.
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