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FitFactor: Las ventajas de ir al cuarto de pesas

August 31, 2017

  El entrenamiento con pesas juega un papel importante en mantener su cuerpo en forma y saludable. Es una gran manera para las personas con trastornos de sangrado para fortalecer los músculos y las articulaciones y, al hacerlo, reducir la frecuencia y la gravedad de las hemorragias. Hablamos con Michael Zolotnitsky, Doctor en Terapia Física, […]

Fatherhood & Hemophilia

June 18, 2017

Being a father has been the most challenging and most rewarding task God has ever asked of me. I would do it all over again in a heartbeat. I have found the relationship between my daughter, Bethany, and me to be such paradox at times, but now that we’re both adults, I can’t express how […]

Volunteer Spotlight: Blood Brothers & Tireless Advocates

April 25, 2017

The bleeding disorders community has been built on the tireless advocacy work of volunteers. Today, we recognize two gentlemen and Blood Brothers who were mentors, friends, and inspiring advocates. We were honored to recognize Ellis Sulser and John Reed during our recent Symposium. The Ron Niederman Humanitarian Award recognizes extraordinary and inspirational service to the […]

Millennials Get Busy- Advocacy for Young Adults

January 26, 2017

By Sarah Shinkman Learning how to advocate is an important life skill at any age. Whether you are practicing personal, peer, or group advocacy, you have the power to influence decisions that may affect you and others. HFA’s final Young Adult Hangout of 2016 featured two community advocates and a health insurance overview by Erin […]

How I Cope With Pain

January 5, 2017

Note: This article is for educational purposes only and is not intended to be construed as direct medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare providers. Pain is a serious medical concern in our country. Approximately […]

Caregiver Heroes: William

November 17, 2016

In honor of National Caregiver Month, we’ll be featuring “Caregiver Heroes” throughout the month of November. While all in the bleeding disorders community are heroes in their own special ways, these folks are being given a special shout-out for the ways they take care of their loved ones and themselves. Meet William from Tennesse. William […]

FitFactor: The Benefits of Hitting the Weight Room

October 31, 2016

Weight training plays an important role in keeping your body fit and healthy. It’s a great way for people with bleeding disorders to strengthen muscles and joints and by doing so, reduce the frequency and severity of bleeds. We spoke with Michael Zolotnitsky, Doctor of Physical Therapy, about the benefits of weight training and his […]

FDA Releases “Voice of the Patient” Summary from Patient-Focused Drug Development Initiative

July 14, 2016

In September 2014, the U.S. Food and Drug Administration hosted a public meeting as part of it’s Patient-Focused Drug Development initiative, a 5 year initiative to learn more from patients across a variety of disease and disorders. We were proud to be a part of this meeting and provided support to several of the patient […]

Conquering Mountains

May 24, 2016

  My beautiful wife Jackie, and I have three boys: Desmond, 8-years-old, Liam, 5-years-old and Patrick, 3-years-old. Patrick has severe hemophilia A, and inhibitors. We live in middle Georgia. Until three years ago we knew nothing about hemophilia. We had no family history and it was the furthest thing from our minds as parents. We have two strong, […]

Colorado Dad Continues Advocacy Involvement

May 3, 2016

Nathan Wilkes has been advocating for his son, Thomas, who has hemophilia and an inhibitor for more than a decade. Nathan began his advocacy by simply writing an essay about his family’s struggle with lifetime caps which was sent to a limited number of contacts within state government and a few friends. He soon found […]

Factor I Deficiency: A Voice for a Rare Community

April 8, 2016

My name is Rick Kelly, and my wife, Josie, I are the proud parents of Forrest. Forrest has a rare bleeding disorder called afibrinogenemia, or Factor I deficiency. This is the story of afibrinogenemia in three anecdotes that explain what afibrinogenemia is, the current state of treatment and its outlook for the future. In sharing […]

Remembering Ryan White 26 Years Later

April 7, 2016

Ryan White died at the age of 18 on April 8, 1990. During the 1980s, Ryan bravely became a national spokesperson and symbol of hope for the hemophilia and HIV/AIDS community after being expelled from middle school due to community fears that the virus would spread to other children. Learn more about Ryan’s legacy by clicking […]

HFA Observes February 29 As Rare Disease Day

February 23, 2016

The Hemophilia Federation of America (HFA) joins the National Organization for Rare Disorders (NORD) on February 29, and others around the world in observing Rare Disease Day. The purpose of this day is to focus attention on the needs of patients and families affected by rare diseases. In the U.S., any disease affecting fewer than […]

Community Voices: An Inhibitor On The High Seas

February 16, 2016

Justin Levesque (pictured in the orange hat), poses with the crew aboard a ship bound for Iceland.  __________________________________________ Justin Levesque has severe hemophilia with an inhibitor. Justin recently had an opportunity of a lifetime when he spent nine days aboard a ship to Iceland as part of an art project that he developed. In this […]

HFA Receives Donation of VeinViewer Flex

November 4, 2015

Christie Medical Holdings Inc., a global leader in portable vein imaging systems to aid in venipuncture procedures, has donated a VeinViewer® Flex to the Hemophilia Federation of America (HFA) as part of the Christie CARES philanthropy program. Based in Washington, D.C., the Hemophilia Federation of America serves as a consumer advocate for safe, affordable and […]

Infusing Love: It’s Like Riding A Bike

September 23, 2015

I’d like to make something very clear: I’m not one of those people who wake up in the morning dying to go for a bike ride! It’s more of a sigh, I guess I should go ride my bike… I first heard about Gears for Good from my friend, Diane. She told me about a […]

Living with Hemophilia: A Young Adult Perspective

August 31, 2015

The transition to adulthood is an exciting time for any young adult, and can include living on their own for the first time, beginning a job, or starting a college/higher education experience. However, this also means young adults must learn quickly how to juggle the inevitable increase of personal responsibility. Dakota, age 20, is a PharmD […]

FDA Clears Two New Oral Drugs for Hepatitis C

July 27, 2015

Note: This article originally appeared on Medscape. To read the FDA release on Daklinza (genotype 3), click here. For the FDA release regarding Technivie (genotype 4), click here. The US Food and Drug Administration (FDA) approved two new drugs today for hepatitis C (HCV), one for genotype 3 and the other for genotype 4. The first medication is […]

My Dad: As Seen By A Hemo Mom & Daughter

June 21, 2015

    I wish I could run on the beach with my Dad. This thought went through my mind as I watched a father and daughter on the beach a few weeks ago.  As I watched the dad and daughter run into the distance, I started to feel sad. I never saw my dad run.  […]

Cycling 4,000 Miles for Hemophilia Awareness

June 19, 2015

Note: This story originally appeared on PRWeb. Barry Haarde is a participant in HFA’s annual Gears for Good ride from West Virginia to Washington, DC. Cyclist Barry Haarde is on a mission to raise awareness about hemophilia and encourage individuals to support needy hemophilic children through Save One Life, which supports more than 1,200 individuals with […]

My Journey with Pain

May 19, 2015

Pain is a very personal experience. Everyone has their own definitions, feelings, and memories associated with pain. Some pain is greater than others. Some pain paralyzes you, and some pain motivates you. How someone chooses to define and cope with pain is molded by his/her experiences throughout a lifetime. Below is a story of one […]

Dear Addy: Is It Safe To Get A Tattoo With Hemophilia?

April 20, 2015

  Dear Addy, I want to get a tattoo, but am worried that my hemophilia will complicate things. Is this safe? Signed, Un-Inked ________ Dear Un-Inked, This is a subject that you and your hematologist need to discuss. Here are some questions to ask your hematologist: Safety—Is it safe for someone with hemophilia to get […]

Infusing Love: Thanks ABC!

March 18, 2015

Wow – what a difference a day makes!  Yesterday our community was outraged by a careless remark made on the ABC television drama, “Secrets and Lies” which aired on Sunday, March 15th.  I, along with thousands of others, voiced my concern in a variety of ways – social media, emails, and good old fashioned talking. […]

Project RED: The Sequel

February 3, 2015

NOTE: This is the second of a two-part story. Click here to read Part I. Working to identify problems and explore solutions among the bleeding disorders healthcare system, the Care Access Working Group (CAWG) continues the efforts on behalf of Project Reaching Everyone Directly (RED). CAWG listens to stories from across the bleeding disorders community […]

Dear Addy: Holiday Travel

December 15, 2014

  Dear Addy, “My family and I are traveling out of state for the holidays. It is our first time traveling away from our hemophilia treatment center. Because of my son’s bleeding disorder we are concerned about insurance covering any emergency medical care he may need at an out of state hospital. How can I […]

Dads in Action Spotlight: Hemophilia Foundation of Northern California

December 15, 2014

[glossary_exclude] The recent addition of Dads in Action (DIA) to the Hemophilia Foundation of Northern California (HFNC) has been instrumental in encouraging our dads to connect, participate and learn from each other. While we worried how successful we would be (Would dads who didn’t know each other open up, share, or even show?!), we were […]

A Caregivers Perspective: Hemo Wife Uncorked

November 29, 2014

[glossary_exclude] I worry when he’s late coming home and I haven’t heard from him in a while. I worry when I can’t get a hold of him on the phone for hours. I worry when he boards a plane for a trip. I worry when we do any physical activity where there’s a possibility he […]

A Caregiver’s Perspective: The Partner

November 24, 2014

I knew I was on to something good when I arrived home from meeting Brent for the first time. We had a fun night out after a spontaneous meeting through a mutual friend. When I got home, I broke the unwritten rule of waiting a while to text someone new. I was thrilled when he […]

FitFactor Video: Putting A Face to Martial Arts

November 20, 2014

When considering a physical activity for themselves or their family members with a bleeding disorder, many people overlook the possibility of martial arts.  It is a sport that can be considered for its many benefits beyond building muscle tone, flexibility and general health.  Some of the biggest benefits that come from practicing any of the […]

Deciding to Chase the Dream

November 19, 2014

It is important for individuals with a bleeding disorder to find a form of physical activity that they enjoy. When muscles are used during exercise it helps to  keep them flexible and strong.  Physical activity also helps individuals to maintain a healthy weight which keeps less stress off the joints, and has even proven to […]


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