As you may already know, helping a loved one manage hemophilia is challenging. While you might feel helpless, you actually have the ability to not only support them, but also others affected by bleeding disorders around the world. You can spread awareness about the disease and help others who may not have the same resources readily available along the way through the following actions:
1. Join a hemophilia nonprofit – All too often a lack of knowledge is mistaken for a lack of compassion. How can we expect a collective effort without the power of the masses? Look into joining a hemophilia nonprofit organization, fundraising team or campaign to help spread awareness throughout your community. There are a number of organizations whose focus is to further the understanding of bleeding disorders, raise funds for research and educate those affected on management and treatment options.
2. Get involved in Congress – Hemophilia World Congress, that is. As a branch of the World Federation of Hemophilia (WFH), the program’s latest retreat to Buenos Aires consisted of more than 4,300 participants from 106 countries around the world, which successfully demonstrating that the issue surrounding bleeding disorders is worldwide. Setting a new record for the largest international scientific meeting place for the global bleeding disorders community, the event featured workshops that addressed topics such as nursing, physical therapy, orthopedics, gene therapy research and much more.
3. Participate in World Hemophilia Day – We hear you. Right now, you may barely have the time to read this blog, much less to consider traveling halfway around the world to volunteer, no matter how deeply you care about the cause. Good news: World Hemophilia Day, which takes place on April 17 of each year, is a great opportunity to spread awareness and promote action when it comes to the disorder. Use your various social networks to do your part that day. Post a Facebook status or Twitter update with a link to your favorite hemophilia nonprofit’s website, or help promote other’s online efforts by sharing their content as it relates to the cause.
When it comes to promoting awareness, every little bit helps. Visit the links for additional information on all of the hemophilia awareness initiatives, and choose the one that is right for you.
Sources:
Centers for Disease Control and Prevention – Hemophilia: http://www.cdc.gov/ncbddd/hemophilia/partners.html
Hemaware – Hemophilia 2010 World Congress: Record Numbers Attend: http://www.hemaware.org/story/hemophilia-2010-world-congress
World Federation of Hemophilia: http://www.wfh.org/index.asp?lang=EN
World Hemophilia Day: http://www.wfh.org/whd/en/
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