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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, […]

Grifols Donates Coagulation Medicines to World Federation of Hemophilia

April 18, 2014

Grifols announced that it will donate up to 20 million units of coagulation therapies in each of the next three (3) years to the World Federation of Hemophilia (WFH). Grifols has been a proud supporter of the WFH and its noble efforts for nearly a decade 鈥 and this unprecedented product donation represents its largest […]

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 […]

Infusing Love: The Union Behind My Reunion

April 16, 2014

The thing about kids is that they grow up 聽they move on and make their own choices. That鈥檚 what Max did 鈥 he moved on and made his own choices. That鈥檚 not to say he has always made GOOD choices. But what would the point of all the years of teaching him to be independent […]

The Benefits of Martial Arts

April 11, 2014

When considering a physical activity for themselves or their family members with a bleeding disorder, many people overlook the possibility of martial arts. Martial arts can be defined as any of the traditional forms of Oriental self-defense or combat that utilize physical skill and coordination without weapons, such as karate, aikido, judo, or Kung Fu, […]

Infusing Love: Hug O’ War

April 9, 2014

I grew up an only child raised by my grandparents, so I never had the sibling experience of arguing and fighting with another child in the house.聽 As a mom, that battle between siblings and the idea of sibling rivalry has been a foreign concept to me.聽 Sure, there were periods of my life when […]

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 […]

Infusing Love: Pass to Play

April 2, 2014

Thomas recently had a project at school that required group work over a few weekends.聽 Another mom in the group offered to host the boys (for which I was grateful 鈥 I didn鈥檛 particularly want a group of five 5th grade boys in my house for several hours over the weekend.) At the time, Thomas […]

Early 1990’s: Living with Hemophilia

March 19, 2014

The early 1990鈥檚 marked a period of action in the hemophilia community. In 1990, Ryan White died at the age of 18 and in 1992, Ricky Ray, one of three brothers infected with HIV/AIDS died at the age of 15. During this time, the hemophilia patient community began to independently ask their own questions and […]

Dear Addy: Employee Disclosure

March 3, 2014

  Dear Addy, Should I tell my work I have hemophilia? I am worried the company might hold my hemophilia against me. I do not want the people at my work to think I can鈥檛 do my job or that I will be using too many sick days. Chronically Fearful ____________________________ Dear Fearful, Your concerns […]

Right Here, Right Now

February 26, 2014

ad路vo路ca路cy noun \藞ad-v蓹-k蓹-s膿 : the act or process of supporting a cause or proposal : the act or process of advocating something The bleeding disorder community has been going to Washington for decades. When we started losing members from the tainted blood products some justifiably angry affected men, women and families decided it was time […]

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 […]

Inhibitor Family Camp: Our Own Kind of Oz

December 20, 2013

What is Inhibitor Family Camp? Hemophilia Inhibitor Family Camp was founded in 2010 by聽Comprehensive Health Education Services (CHES), and is made possible through an educational grant provided by Novo Nordisk. There are currently two programs held annually, both take place at camps that are part of the Serious Fun Network (formerly known as The Hole […]

It’s Not Too Late-Gears for Good 2013

September 25, 2013

It鈥檚 not too late to make a difference! The Gears for Good bike ride is this Saturday, September 28th, 2013. 聽FitFactor encourages physical activity in individuals with bleeding disorders.聽 HFA provides an opportunity for those who are physically active to benefit the bleeding disorders community in our annual charity bike ride-Gears for Good.聽 You don鈥檛 […]

College Check List

August 14, 2013

A student going away to college is an exciting time, but can also be scary and unsettling if he/she has a bleeding disorder. Whether living in a college dorm room or on an off campus apartment, a student will need some basic items to stay healthy. We have provided a short list of essentials to […]

Raising Awareness while Raising Children

March 31, 2013

I can鈥檛 say that I was 鈥渁ware鈥 of hemophilia before Thomas was born. Since there was no family history, the only thing I could vaguely recall about hemophilia was that Ryan White had it. My knowledge beyond that was slim to none. In the days right after the diagnosis, I didn鈥檛 want to look at […]

Largest health insurer to keep key parts of law regardless of court ruling

June 11, 2012

Largest health insurer to keep key parts of law regardless of court ruling from the Washington Post:聽http://www.washingtonpost.com/national/health-science/largest-health-insurer-to-keep-key-parts-of-law-regardless-of-court-ruling/2012/06/10/gJQA7VYfTV_story.html?tid=pm_pop By N.C. Aizenman,聽Monday, June聽11,聽12:11聽AM The nation’s largest health insurer will keep in place several key consumer provisions mandated by the聽2010 health-care law聽regardless of whether the statute survives Supreme Court review. Officials at UnitedHealthcare will announce Monday that whatever […]

HHS Considering Study on Blood Donation Standards for Gay and Bisexual Men

March 16, 2012

By Jane Norman, CQ HealthBeat Associate Editor The Department of Health and Human Services wants input on how to design a study that would detail under what circumstances men who have a history of sex with other men should be allowed to donate blood. Under current Food and Drug Administration policy, men who have had […]

U.S. Department of Health and Human Services releases Essential Health Benefits Bulletin

January 6, 2012

On Monday, Dec. 16, the U.S. Department of Health and Human Services (HHS) released a bulletin outlining guidance to states on implementing Essential Health Benefits (EHBs). 聽As you may recall, the Affordable Care Act will require individuals to have insurance coverage by 2014.聽 Individuals and business may purchase health insurance in a state based “health […]

Does your child have a school nurse?

September 15, 2011

(CNN)聽— As a school nurse in Rochester, Michigan, Ronda Harrison has more than 15,000 students in 23 buildings under her care. She works out of the district’s administrative offices and spends her days giving PowerPoint presentations to educators and communicating with parents over the phone. “[It is] scary the fact that I’m responsible for so […]

Understanding the Debt Ceiling and the “Super Committee”

September 9, 2011

In early August the President signed into law the Budget Control Act of 2011, which is reported to save approximately $917 billion over the next ten years and will raise the debt ceiling by $900 billion, therefore carrying the government through the end of 2011. The bill also establishes a new joint Congressional committee that […]

Whatever He Wants: The Cleghorns

July 30, 2011

Choices are important to the Cleghorn family. Before their son Nicolas was born, Tracy and Lance Cleghorn envisioned a world of possibilities for him. “I want him to do whatever he wants to do, whether that’s play football, play rugby, place lacrosse…” says Tracy. “I want him to make that choice. I don’t want that […]

A Hopeful Future

July 12, 2011

Ryan and EJ share their experiences growing up with hemophilia. The future of our community is hopeful with the advancements in care and support from others who understand!

Terry Lamb

July 2, 2011

Terry talks about growing up with hemophilia and how staying active has helped him live a wonderful life!

Living With Hepatitis C

July 1, 2011

Mark Antell talks candidly about his hemophilia and hepatitis C.

Bleeding Disorders Family Meets President Obama

May 21, 2010

The Forbes family shares their story of visiting the Oval Office.

Rare Disease Day: Feb. 28th 2010

January 14, 2010

Celebrate Rare Disease Day on February 28th 2010!聽 Write your governor to ask for the last day in February to be proclaimed Rare Disease Day in your state.聽聽 Thank you to NORD, the National Organization for Rare Disorders for organizing this event!

Derick Stace-Naughton

October 22, 2009

Derick Stace-Naughton, a young man with von Willebrand’s Disease, started the group “Students for the Awareness of Bleeding Disorders.” 聽Derick wants YOU to urge your member of congress to co-sponsor H.Con Res.147. 聽H.Con.Res.147 promotes screening for vWD.

Derick Stace-Naughton

October 22, 2009

[vimeo]http://vimeo.com/7055318[/vimeo] Derick Stace-Naughton, a young man with von Willebrand’s Disease, started the group “Students for the Awareness of Bleeding Disorders.” 聽Derick wants YOU to urge your member of congress to co-sponsor H.Con Res.147. 聽H.Con.Res.147 promotes screening for vWD.

Share Your Voice

June 26, 2009

The Voices Campaign is HFA’s grassroots advocacy initiative aimed at raising general public and legislator awareness of the bleeding disorders community through personal stories from affected individuals and their families.聽 In the approaching national debates regarding health care reform, HFA wants to ensure the bleeding disorders community is heard, and through the Voices Campaign, members […]


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