Get Connected—Hemophilia Online

Growing up, Armando Serrano, Jr., 32, of Chicago, Illinois, didn’t know any other Hispanics with hemophilia. With the birth of the Internet, however, those days are long gone.

While there is no substitute for the face time many people with hemophilia experience at meetings and other events, the Internet—and social media—have opened up a whole new world of knowledge and connections.

Surf’s Up

Whether you have a question about a symptom, want to learn more about hemophilia or desire to make a difference, there’s no doubt the Internet is a great resource. Organizations—international, national, and regional—can be an excellent place to start.

For example:

• World Federation of Hemophilia (www.wfh.org) – If you’re looking for information about global programs, conferences, and what is going on in the global hemophilia community, be sure to check out this site.
• National Hemophilia Foundation (NHF) (www.hemophilia.org) – This U.S.-based organization focuses on education, research, and advocacy. The information on the site about hemophilia and blood safety is useful even if you live outside of the United Sates; for anyone in the U.S., you should check out the list of local and regional NHF chapters.
• Hemophilia Federation of America (www.hemophiliafed.org) -– This group fosters advocacy, collaboration with other hemophilia organizations, and dialogue within the hemophilia community. Among other projects it supports the “Voices” campaign, encouraging individuals and their families to share their stories.
• European Haemophilia Consortium (www.ehc.eu) – Representing 43 countries in Europe, this patient group works to improve the quality of life for people with hemophilia as well as communicating with and educating others about the disease. Contact information is provided for member countries’ hemophilia organizations as well.
• Canadian Hemophilia Society (www.hemophilia.ca) – This society is striving to find a cure and improve the lives of people with hemophilia today. The site contains a wide variety of information ranging from educational materials and individuals sharing their stories to provincial chapters and a list of treatment centers throughout the country.
• Haemophilia Foundation Australia (www.haemophilia.org.au) – In addition to listing treatment centers in Australia, this organization provides information about hemophilia and promotes advocacy, education, and research advances.

Obviously, it’s impossible to name every hemophilia organization out there and this is just a starting point. Many of these sites also contain a section of links to other organizations that can be useful. Finally, keep in mind that while these larger organizations can be great sources for education and advocacy, local organizations can be beneficial for meeting other people in your area with hemophilia.

Friend Me!

As useful as the Internet is for information, it has also revolutionized the way people with hemophilia are able to interact. “The best thing is understanding that you are not alone, that other people have the same problems you have and the same doubts, even though they live in New Zealand, the farthest place in the world from Spain,” says Frankly.net Advisory Council member Juan Ramón Olmos Sánchez, 25, of Granada, Andalusia, Spain.

When it comes to social networking, many people with hemophilia keep in touch using a variety of methods including e-mail, Twitter, texting and instant messaging. However, the most popular of social media networks is Facebook.

And not necessarily the way you might think.

Sure people with hemophilia “friend” others after meeting at events but Facebook has also become an instrumental tool for organizations reaching out to members. Almost all of the organizations listed above have Facebook pages as do a large number of regional and local societies. In fact, Facebook and other similar sites may be the way of the future.

“In my regional hemophilia association we opened a Facebook page a couple of months ago and we were so surprised about the result,” says Sánchez. “We are getting more visits to the Facebook page than to our official Web page. Unlike with a regular Web site, you don’t have to go and look for the information. It already comes to you just by logging on and seeing the new events on your Facebook wall.”

Case in point: the group “My Blood Brothers.” Originally a Web site, it has now moved to Facebook and has a variety of different kinds of posts including upcoming events, individuals asking questions and links to articles. To learn more visit the site at www.facebook.com/mybloodbrothers.

Finally, another way of interacting with others who have hemophilia is by reading—and commenting—on people’s blogs. Several are written by individuals with hemophilia, including “Sweet Affliction” at www.sweetaffliction.com and “Hemo Hijinks” at www.hemohijinks.com.

Ultimately, while there are wonderful benefits of using the Internet, don’t forget your common sense. “The difficulty with the Internet is that just because it’s in print doesn’t mean it’s true,” cautions Ed Kuebler, a social worker at the University of Texas Gulf States Hemophilia and Thrombophilia Center and board member of Frankly.net. “You need to take any information you get back to your medical team so that you’re not just accessing information, but accessing accurate information.”