Donate

Adult Men

A Caregiver’s Perspective: The Unaffected Sibling

November 17, 2014

My brother Evan was born on July 3rd, 2007. Two days after he was born, he was diagnosed with severe hemophilia A. I was eight years old when he was born and had never heard of this condition. It was difficult for me to grasp that my little brother would not live a 鈥榥ormal鈥 life. […]

November is National Caregiver Month

November 2, 2014

The bleeding disorders community is made up of dedicated caregivers. Moms, dads, grandparents, partners, spouses, and friends play a crucial supportive role in their loved one鈥檚 well-being. However, caregivers can often feel stressed, overwhelmed and burnt out. Therefore, it is important for caregivers to remember to take time just for them. Caregivers often feel guilty […]

Mens Health Magazine: Vaughn Ripley

October 28, 2014

Earlier this year we encouraged the bleeding disorders community to vote for Vaughn Ripley, fitness guru living with hemophilia and HIV, during a聽Men’s Health聽cover contest. Due to your support, Vaughn received nearly 30,000 votes, earning him the below article in the November edition of the magazine! This article helps to bring awareness and education about […]

FDA Approves First Combination Pill to Treat Hepatitis C

October 10, 2014

The U.S. Food and Drug Administration today approved Harvoni (ledipasvir and sofosbuvir) to treat chronic hepatitis C virus (HCV) genotype 1 infection. Harvoni is the first combination pill approved to treat chronic HCV genotype 1 infection. It is also the first approved regimen that does not require administration with interferon or ribavirin, two FDA-approved drugs […]

Bullying: A Serious Problem for Kids with a Chronic Condition

October 9, 2014

Children with special health needs such as a bleeding disorder can be at an increased risk of being bullied because of issues like physical vulnerability, social skill challenges, and intolerant environments.聽Kids with hemophilia may become a target when they use crutches, are limited to certain activities during recess/gym classes, have a visible PICC line/port, or […]

Brighter Outlook for Community Members Affected by HCV

October 8, 2014

Hepatitis C (HCV), often referred to as the 鈥渟ilent killer鈥, has been a serious crisis for the bleeding disorders community, who contracted the disease from contaminated blood products prior to the early 1990s. Treatments exist, but with many difficult side effects and mediocre efficacy. However, advocacy in the bleeding disorders community has contributed to the […]

Community in Action: Beards for Bleeders

September 30, 2014

John Bruno is truly a Dad in Action. HFA recently asked John a few questions about his involvement in the community. John sets a great example for all of those affected by a bleeding disorder. “I’m just looking for a way to do my part in supporting this great community.” Join John in his efforts […]

HFA Policy & Advocacy Intern Synopsis

September 24, 2014

Earlier this summer we welcomed our summer policy & advocacy interns to our DC office. Lewis and Maria are part of the bleeding disorders community and were chosen to participate in a 8 week internship because of their leadership qualities and interest in the field of policy and advocacy. Throughout the summer, Lewis and Maria […]

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 […]

HFA’s Excutive Director to FDA: Treatment is Not One Size Fits All

September 23, 2014

On Monday, September 22,聽several members of the bleeding disorders community came out to聽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 to share […]

Adult Male Disccuses Pain Management and Treatment with FDA

September 23, 2014

On Monday, September 22,聽several members of the bleeding disorders community came out to聽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 to share […]

Adult Man Shares Seven Decades of Hemophilia Treatment with the FDA

September 23, 2014

On Monday, September 22, members of the bleeding disorders community came out to聽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 to share […]

Blood Brother Shares Hemophilia Treatment Experiences With FDA

September 23, 2014

On Monday, September 22, 聽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. Patients and advocates of every age, every background, and with several different conditions came out […]

Hemophilia is Only a Handicap if You Let it Be

August 21, 2014

Below is an excerpt from our one-of-a-kind Dads’ book, Dads in Action: Real Stories from the Bleeding Disorders Community. This book is free to all dads who sign up for our Dads in Action program. ___________________________________________________ I am 38 years old. I live with severe Hemophilia A, but I don’t suffer from it. I have […]

Living With a Bleeding Disorder Across the Decades

August 7, 2014

Blood Brotherhood is a national program for adult men with a bleeding disorder and provides a sense of community through education聽and support. The below articles are written by Blood Brothers enrolled in the program and features their stories of what聽growing up was like during different decades. _____________________________________________ Carl | Severe Hemophilia 聽B | 1960s – […]

Infusing Love: Knocking On Capitol Hill’s Doors

June 19, 2014

Advocacy used to scare the devil out of me. I avoided anything that had to do with going to my state capitol or writing a letter to a legislator.聽 Advocacy sounded like downright torture and I didn鈥檛 want any part of it. A perspective change came in the late fall of 2005. My husband called […]

Infusing Love: A Father’s Perspective

June 15, 2014

Today HFA is proud to present a special “Infusing Love” blog — an excerpt from our new book, “Dads in Action: Real Stories from the Bleeding Disorders Community.” 聽To order your FREE copy of the book, click HERE. Parenthood began for me as it has for many others; I was a first-time father, venturing through […]

Supportive Dad With Creative Solutions

June 13, 2014

What is a father to do when he has grown up with an intense needle phobia and now discovers his first-born son has been diagnosed with severe hemophilia? Well, in the Mell home we got very creative. Our family has always made it a point to face our daily struggles as a complete unit, relying […]

CMS: Medicare Will Cover HCV Screening

June 5, 2014

The Centers for Medicare & Medicaid Services (CMS) has determined the following: The evidence is adequate to conclude that screening for Hepatitis C Virus (HCV), consistent with the grade B recommendations by the U.S. Preventive Services Task Force (USPSTF), is reasonable and necessary for the prevention or early detection of an illness or disability and […]

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 […]

Laughing Away the Pain

May 23, 2014

I was diagnosed with severe Hemophilia A at birth in New Jersey. During my childhood, I moved around often with my family. Needless to say, these experiences have taught me how to adapt. I have been treated at several different hemophilia treatment centers, and every time I changed my center, I had to learn a […]

CDC Six-Year Inhibitor Study Released

May 16, 2014

The journal Haemophilia has published the results of a six-year study called the Hemophilia Inhibitor Research Study (HIRS) that was designed to test the feasibility of conducting national monitoring for inhibitors among people with hemophilia in the United States. The study collected blood specimens on a regular basis from study participants, which were tested at […]

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 […]

How a Liver Transplant Changed My Life

April 25, 2014

One of the most important things you can do for your health is to have a proper diet. What you put into your body聽affects how you look and feel. Maintaining a healthy weight is especially important for individuals with a bleeding聽disorder. Being at a healthy weight can reduce the number of bleeding episodes you experience, […]

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 […]

Hemophilia Patients Urge NIH & IRB To Stop Ineffective Hepatitis C Trial

April 22, 2014

Below is a letter from People with Bleeding Disorders and HCV, to the Institutional Review Board (IRB)聽and National Heart, Lung, and Blood Institute (NIH) office recommending to end recruitment of a clinical study (pINF+RIBA+Telaprevir). 聽People with Bleeding Disorders feel聽that this study is out-dated and mediocre therapy for Hepatitis C (HCV). ——————————————————— TO: Institutional Review Board, […]

Positive Life: Barry Haarde Road Tripping Again

April 20, 2014

(Positive Life): Bob Leahy:聽Barry. You鈥檙e off on another trip. Tell us about this one. Barry Haarde: This year鈥檚 ride is the shortest but fastest ride of the three and departs from L.A. on Easter Sunday and rolls all the way to Savannah, GA, which amounts to about 2,900 miles over a period of 27 days, […]

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 […]


Sign up for E-mails, Dateline Magazine, and other ways to stay connected.