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Inhibitors_Porter

We Did Not Fail Treatment, It Failed Us

When my son Matthew was born with severe Hemophilia A in 1994, I thought I was prepared. I had been raised by a Dad with hemophilia, lost him to HIV in 1986, and had thoroughly researched product safety prior to deciding to give birth to my son. I had prenatal testing done and knew that […]

CDC: Report on the Universal Data Collection (UDC) Project

From 2005-2009, federally funded Hemophilia Treatment Centers (HTCs) participated in the CDC’s Universal Data Collection (UDC) to help collect vital health information from about 27,000 patients in the bleeding disorders community. Report Highlights from the UDC Report This surveillance report focuses on UDC data collected during years 2005 through 2009. A total of 44,239 visits were made […]

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Dear Addy: Informed Consent

Dear Addy, The last time I took my son to his HTC I was asked to participate in a survey. I didn’t have time to read the consent form because my son wasn’t feeling well that day, so I asked if I could complete the survey at the next visit. The nurse told me I […]

Everyday Health: Dr. Sanjay Gupta Explains Hemophilia Myths & Facts

During Hemophilia Awareness Month we reached over 300K people on social media by posting a fact-a-day about bleeding disorders. Dr. Sanjay Gupta’s staff from Everyday Health, saw our efforts and reached out to us about working together on a piece about hemophilia. In honor of World Hemophilia Day, this informative article launched. __________________________________ Title: Myths and Facts About Hemophilia […]

AFFIRM

AFFIRM: The Next Generation of Hemophilia Leaders

AFFIRM (Adult Fellowship for Integrating Responsible Mentors) is a three- year leadership development program targeting men ages 25 to 35 from around the world . In its second term, ten men have demonstrated dedication and leadership within their local community to improve the lives of those with a bleeding disorder (see list below). Twice a […]

FDA: Hemophilia Treatments Have Come a Long Way

Gone are the days when a hemophilia diagnosis meant you could not live a normal life. Now more hemophilia treatments are approved by the Food and Drug Administration (FDA), and people with the condition can better manage bleeding. That’s good news as thousands observe World Hemophilia Day on April 17, 2014. Hemophilia is a rare bleeding […]

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Thousands of Families Observe World Hemophilia Day

Today (April 17th),  tens of thousands of families across our nation and around the world will recognize World Hemophilia Day to raise awareness of bleeding disorders. “World Hemophilia Day brings public awareness about bleeding disorders and encourages the development of improved treatment,” said Kimberly Haugstad, Executive Director of Hemophilia Federation of America (HFA). “Worldwide, 1 in 1,000 […]

Blood Sisterhood_Trevor

A Carrier Seen Through Her Father’s Eyes

Having hemophilia is an interesting challenge for an individual. Throughout my life, I have tried to learn as much as I could about this condition and find a way to overcome the adversities it often presents. I thought I had this thing down to a science, but I had no idea what to expect as […]

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CDC Webinar: New Challenges in Hemophilia

On Thursday, April 3, 2014 the Centers for Disease (CDC) control hosted an informative and important webinar about new challenges facing the hemophilia community. If you missed it, take a look at Dr. Guy Young, Director of the Hemostasis and Thrombosis Center at Children’s Hospital Los Angeles, presentation slides about about the impact of: overweight and […]

Mom's Blog_Kimberly_Ben

Infusing Love: It’s All About the People

In 2008 my husband, two kiddos and I traveled to our first Hemophilia Federation of America (HFA) annual Symposium.  We had been to a couple of NHF meetings since the kids had been born but we did not know much about HFA.  Kim Bernstein, a truly talented community advocate, had been pushing me that I […]

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Assisting and Advocating for the Bleeding Disorders Community