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Young Adults

FDA Hosts Patient-Focused Meeting

September 23, 2014

  On Monday, September 22,聽several members of the bleeding disorders community came out to share their experiences with bleeding disorders treatment with the FDA.* HFA worked with partners like NORD, PPTA, and NHF to ensure that our community was effectively represented.聽Patients and advocates of every age, every background, and with several different conditions came out […]

Sisters By Chance, Friends By Choice

July 17, 2014

A carrier of the hemophilia gene is a female who has a genetic mutation on one of her X chromosomes. About 1/3 of carriers experience bleeding problems and are often referred to as symptomatic carriers. By definition, if a woman has clotting factor levels less than 50%, she has mild hemophilia. Ashley and Sarah are […]

Project RED: Reaching Everyone Directly

May 29, 2014

A word that we hear frequently right now is 鈥渁ccess鈥濃攁ccess to quality care, resources, education, community, and other people affected by a bleeding disorder. Our Blood Brothers and Sisters everywhere have these concerns. The recent rise in the number of bleeding disorder organizations around the country (4 new chapters and member organizations) in the last […]

We Did Not Fail Treatment, It Failed Us

May 20, 2014

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

April 29, 2014

From 2005-2009, federally funded Hemophilia Treatment Centers (HTCs) participated in the CDC’s聽Universal Data Collection (UDC)聽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 […]

Dear Addy: Informed Consent

April 28, 2014

Dear Addy, The last time I took my son to his HTC I was asked to participate in a survey. I didn鈥檛 have time to read the consent form because my son wasn鈥檛 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

April 28, 2014

During聽Hemophilia Awareness Month聽we reached over 300K people on social media by posting a fact-a-day about bleeding disorders. Dr. Sanjay Gupta’s staff from聽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:聽Myths and Facts About Hemophilia […]

AFFIRM: The Next Generation of Hemophilia Leaders

April 22, 2014

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

April 18, 2014

Gone are the days when聽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鈥檚 good news as thousands observe World Hemophilia Day on April 17, 2014. Hemophilia is a rare bleeding […]

Thousands of Families Observe World Hemophilia Day

April 17, 2014

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

A Carrier Seen Through Her Father鈥檚 Eyes

April 9, 2014

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 […]

CDC Webinar: New Challenges in Hemophilia

April 8, 2014

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聽about about the impact of: overweight and […]

Infusing Love: It’s All About the People

March 26, 2014

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

Girls Have Hemophilia, Too!

January 7, 2014

My childhood was relatively normal. I grew up the oldest of three children, had two caring and attentive parents, and did well in school. As a family, we went on regular vacations. I faced many challenges growing up and did not know at the time that they were related to an undiagnosed bleeding disorder. There […]

Keeping Their Memory Alive: World AIDS Day

December 1, 2013

Had I been the Matthew my mother was expecting to give birth to, my life would have been astronomically different. I was born right around the time the first factor concentrates to treat hemophilia were available for home use. Had I been born a male rather than a female, I probably would have been diagnosed […]

Developing Autonomy vs. Relying on Others

November 12, 2013

The transition from childhood to adulthood can be full of exciting opportunities to have new experiences and shape one鈥檚 own unique individuality. However, adulthood can also come with its own set of challenges, including decreased reliance on parents and taking important steps to reach personal life goals. For young adults living with bleeding disorders, additional […]

CHOICE: Improving HFA Services for the Community

October 22, 2013

To all of you who have taken the time to participate in the CHOICE (Community Having Opportunity to Influence Care Equity) Project by taking the survey, thank you. For those who have yet to take the survey, please do (call 800-230-9797 or go to choice.hemophiliafed.org). CHOICE is about the bleeding disorders community and working with […]

I was a Runner; Now I鈥檓 a Warrior

October 17, 2013

Most of September 24th, 2012 is still a blur in my mind, but what clearly stands out is that it was the day my body stopped moving forward. My name is Courtney, and I have von Willebrand Disease (vWD) Type 1. People with von Willebrand Disease have decreased or malfunctioning von Willebrand factor and cannot […]

Inhibitors Will Not Inhibit Our Family

October 10, 2013

I’m sitting and watching my son Blake play catch in the park with a friend. He runs for the ball and trips on a rock and lands in the dirt. I stay seated…and it’s really hard. I remind myself that we are in a different place now, but it’s still very hard. A year ago, […]

A Stronger and Healthier Body Means Less Bleeding

January 31, 2013

  I have hemophilia. When I was a in school, my parents told me that I couldn鈥檛 play football, baseball, soccer, or other contact sports, because I was a 鈥渂leeder.鈥 I always wondered growing up, what does being a bleeder even mean? All I knew was that I bruised easily and wasn鈥檛 going to die […]

Hemophilia: A Suite That Fosters Empathy

January 28, 2013

(Thomas Ford, on the left, with his cousin, Leland Smith on the right) I remember visiting my cousin Leland鈥檚 house from a very young age. Spending time with family has and always will be one of the most important things to me, but spending time with Leland was always different. My first memories of my […]

Beyond Hemophilia, filmed by Justin Lindhorst

January 12, 2012

Michael Jones is a 13 year old with hemophilia A. Michael doesn’t let his hemophilia slow him down, he enjoys playing baseball and staying active. Justin Lindhorst was a part of HFA’s Young Leaders program at Symposium and is now a part of HFA’s Media Task Force.

Step by Step Infusion, Produced by: Nicholas Reiser & Leland Smith

August 30, 2011

Nicholas Reiser explains the process of infusing himself with clotting factor. Nicholas Reiser and Leland Smith were both a part of HFA’s Young Leaders program at Symposium and are now a part of HFA’s Media Task Force.

Julie Mora, Video Created by Joe Tavarez

July 30, 2011

Julie Mora is a Spanish-speaking mother from Texas. Joe is part of HFA’s Young Leader program and created this video after a program he was a part of at Symposium!

The Importance of Comprehensive Care

June 3, 2011

Watch this video to understand why comprehensive care is vital for people in the hemophilia community to live a long, healthy life. You will hear from individuals who have directly been impacted by comprehensive care and an individual who works in one of the centers and has seen first hand the success of comprehensive care.

Kyle & Jesse: A Young Perspective

April 23, 2011

Kyle and Jesse are two boys who live with hemophilia. These two youngsters are showing a great example to their peers about the importance of advocacy!

Bleeding Disorders in the News

November 20, 2010

Our voice is being heard!聽 The media is helping us share our story.聽 Check out our community members who were featured in the news!

Von Willebrand Disease: A Family Affair

October 28, 2010

Von Willebrand Disease (vWD)聽is the most common type of bleeding disorder, affecting males and females equally (it is estimated that about 1-2% of the world’s population has vWD). However, because symptoms can be mild, many people affected have not been diagnosed. People with vWD have decreased or malfunctioning Von Willebrand factor (VWF) activity and therefore […]

Michael Bishop — You Are Not Alone

September 28, 2010

By Michael George Bishop My name is Michael George Bishop and I have Hemophilia B with inhibitors. I decided to share my story with the Hemophilia Federation of America (HFA) and “Voices” because I wanted other kids like me, with hemophilia -and those in physical or emotional pain – to know they are not alone […]

College Student Shares His Story

March 25, 2010

Christian Rodriguez, an HFA聽 advocacy intensive participant is an inspiration to the bleeding disorders community.聽 Christian has made it his mission to improve the lives of himself and the people in his community by sharing his story.聽 The goal of the intensives program is to inspire participants to take an active, grassroots approach to effecting […]


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