Bayer Announces 2012 Recipients of Bayer Hemophilia Awards Program

By | News | No Comments

Bayer HealthCare today announced the 2012 recipients of the Bayer Hemophilia Awards Program (BHAP). This year, the company awards a total of approximately $2.3 million USD in funding to 15 recipients in nine countries.

BHAP is the largest program of its kind in hemophilia, funding innovative research and educational initiatives around the world. As such, BHAP is part of Bayer’s commitment to research, support and disease management in hemophilia.

The 2012 announcement is especially meaningful, as it marks the 10th anniversary of BHAP and its resulting contributions to the global hemophilia community. Since its founding in 2002, BHAP has awarded more than 200 grants, totaling more than $24 million USD, to researchers and caregivers from 29 countries around the world. BHAP support has resulted in more than 360 scientific abstracts, publications and presentations by awardees.

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barry haarde

4 Ways To Become A Hemophilia Advocate

By | Bleeding Disorders, Blood Brothers, Haplos, Hemophilia, Laurie Kelley, Philippines, Save One Life | No Comments

Here are 4 practical ways to be a hemophilia advocate:

Talk about hemophilia. In your school. In your blog. In your FB wall. In your tweets. Wherever your sphere of influence may be, talk about hemophilia. By doing so, you raise awareness on this still largely unknown disorder.

Volunteer. Whether you have hemophilia or you don’t, if you have t a heart to reach out to the hemophilia community, volunteer your services. You can organize psycho-social activities for the youth group, or a camp for the children or you can assist in the general meetings. Whatever way you think you can help, let your local hemophilia community know that you are willing and available to help.

Visit a sick person with hemophilia. Every now and then, a “blood brother or sister” gets sick. Visit him/her whether in the hospital or in his/her home. That someone will be grateful to know you care.

Be active in your local hemophilia group. While being “connected” in social networking sites like Facebook and Twitter is good, nothing beats being connected in flesh. So go, attend meetings of your local hemophilia community.

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barry haarde

Interview with an extraordinary man: Barry Haarde

By | News, Save One Life | No Comments

On the verge of an incredible feat, Bob Leahy talks to HIV, HepC and hemophilia long-term survivor Barry Haarde from Houston, Texas, who is about to ride his bike 3,667 miles coast to coast across North America.

Bob Leahy: Hello Barry, It’s a pleasure to talk to you. PositiveLite.com readers will recall we featured your story here and now you have something new to talk about. You’re about to start cycling across North America, from west to east, right? I want to talk about that in a minute, and I’m excited your tour includes a little piece of Canada, but first I want to delve in to your story, if that’s OK with you. Now your story has similarities with Vaughn Ripley’s, whom we interviewed a few weeks back. You know Vaughn right? He sounds like a great guy.

Barry: I first learned about Vaughn when I ran across his book, Survivor, on Amazon. We met for the first time last year and have done some cycling together. He and I both “came out” about the same time and our stories are very similar. He wants to ride across America too, and he may be the only guy I know from the generation of hemophiliacs that contracted HIV that is in shape to do it.

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About the author: Award-winning blogger Bob Leahy first made his social media mark a decade ago on LiveJournal.com where there are still to this day almost 3,000 entries of his available to be read. He was a featured blogger on Ontario’s HIVStigma.com campaign, along with PositiveLite.com publisher Brian Finch. He joined PositiveLite.Com at its inception in 2009 and became it’s Editor a year later.

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Newborn Star.  Unknown to us, the "blue birth marks" were early signs of an inherited bleeding disorder.

Coping With Hemophilia In A Developing Country

By | Bleeding Disorders, Featured, Hemophilia, von Willebrand Disease | 2 Comments

Raising a child with a special condition — whether hemophilia or something else — poses a different set of challenges. On top of that, living in a country like the Philippines where public healthcare is so wanting in so many ways, can add up to the daunting task of raising a child with a rare disorder like hemophilia.

Children with hemophilia have unique needs compared with others, even their own siblings without the condition. And yet, we parents need to be careful NOT to put our children with special needs inside a bubble. Below are some basic tips that may be helpful, particularly to parents in developing countries like the Philippines.

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