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Proud Mom of an Alphabet Belcher

March 27, 2013

From the time Thomas was an infant, I had been told hemophilia camp was not to be missed.聽 Kids and adults alike told me how wonderful camp was for them and how it was their most anticipated week of the year.聽 There are over eighty summer or family camps for persons with bleeding disorders in […]

Siblings: Unaffected, but certainly AFFECTED

March 13, 2013

  As a mom, the single hardest thing for me about hemophilia hasn’t been the unpredictability, or the pain, or the insurance, or the infusions. 聽The thing I struggle with and lose the most sleep over are my “unaffected” girls. I’ve got this hemophilia thing down – recognize the bleed, treat it. Rinse, repeat. 聽But […]

That Almost Never Happens

March 6, 2013

                At the very first meeting we had at the Hemophilia Treatment Center (HTC) when Thomas was a week old, Nathan asked the HTC team, “Does the medicine ever stop working? Can you build up antibodies to it?” Not wanting to worry us and having a good track […]

HFA Honors February 28th As Rare Disease Day

February 28, 2013

        The Hemophilia Federation of America (HFA) will join the National Organization for Rare Disorders (NORD), and others around the world in observing Rare Disease Day on February 28, 2013. The purpose of this day is to focus attention on the needs of patients and families affected by rare diseases. In the […]

The Truth About Advocacy

February 27, 2013

              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 […]

Earning My Mommy Medical Degree

February 25, 2013

                  Moms need a safe place to land sometimes. With that in mind, HFA is launching a blog dedicated to all things mom!聽In this safe spot, moms of a child with a bleeding disorder will be able to read stories and draw inspiration from like-minded (and similarly […]

Welcome to Infusing Love: A Mom’s View

February 19, 2013

                Moms need a safe place to land sometimes. With that in mind, HFA is launching a blog dedicated to all things mom!聽In this safe spot, moms of a child with a bleeding disorder will be able to read stories and draw inspiration from like-minded (and similarly crazed) […]

Loving Kindness Meditation (Audio & Video)

February 18, 2013

There are many benefits of meditation. If you practice this guided meditation regularly it can help you stay positive towards yourself and others. It can also help to keep you calm in difficult situations and reduce irritation and anger. Kindness is an antidote for anger and irritation.

Preview of Mom’s Blog: The Power of Unconditional Love

February 14, 2013

                My mother and grandmother always warned me, but I never understood it until I experienced it first hand.聽聽I’m not even really sure it’s fair to say I felt it in the preceding nine months – (it was actually pretty hard to feel much of anything beyond all […]

Flexing Your Online Advocacy Muscle

February 6, 2013

In the early 1980s, when universities and the government were working together to expand the Advanced Research Projects Agency Network (ARPANet), an early version of the Internet, the Massachusetts Institute of Technology issued this warning to users: 鈥淪ending electronic mail over the ARPANet for . . . political purposes is both anti-social and illegal.聽 By […]

How to Win the Battle of the Bugs

February 4, 2013

For most of us, fall and winter means less time outdoors in the fresh air, and more time spent in close quarters with those that we work, play, learn, and live with. It is a great opportunity for cold and flu viruses to work their way from one person to the next.聽 While we all […]

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 […]

Families Throughout the U.S. Observe World AIDS DAY

November 30, 2012

Link to World AIDS Day Press Release聽 Washington, DC – Tomorrow, hundreds of thousands of people in our nation and around the world observe World AIDS Day to raise awareness about HIV and AIDS. World Aids Day was established in 1988 by the World Health Organization (WHO) to ensure renewed and continual attention to the […]

2012 Election Results Will Have Long-term Effect on the Bleeding Disorder Community

November 9, 2012

Link聽to PDF of聽HFA Reacts to 2012 Election Washington, D.C. – This week, President Obama was re-elected as the 44th President of the United States; in Congress the balance of power remained the same as pre -election: Democrats in control of the Senate and the House led by Republicans.聽 On the state level, elections were held […]

Press Release: HFA Reacts to Supreme Court Ruling on Affordable Care Act

June 28, 2012

HFA Reacts to Supreme Court Ruling on Affordable Care Act Ruling will have Long-term Effect on the Bleeding Disorder Community聽 FOR IMMEDIATE RELEASE: June 28, 2012 Contact: Richard Pezzillo (202)-675-6984聽r.pezzillo@hemophiliafed.org Link to PDF of HFA聽Reacts to Supreme Court Ruling聽 Washington, D.C. – In a 5-4 vote, the United States Supreme Court today released its much-anticipated […]

Community Mourns Loss of Hemophilia Advocate and Champion

May 30, 2012

The bleeding disorders community has lost a national champion and advocate, Terry Lamb. Terry passed away Monday afternoon, May 29, 2012, of a cerebral hemorrhage at the age of 61. Terry was born and resided in Lynchburg, VA. 聽At age three, he was diagnosed with severe hemophilia and fought hard to not let his condition […]

Community Mourns Loss of National Champion for Woman’s Bleeding Disorders

April 24, 2012

4-23-12 — Our community has lost a national champion for women’s bleeding disorders, Anna DeSimone. Anna, a resident of New Jersey and former board member of HFA, 聽was one of the first to help drive awareness, educate and help correctly diagnose, manage, and treat women with bleeding disorders. She will be deeply missed. Further information聽will […]

Press Release: Families Throughout the U.S. Celebrate World Hemophilia Day

April 17, 2012

Families Throughout the U.S. Celebrate World Hemophilia Day FOR IMMEDIATE RELEASE: April 12, 2012 Contact: Richard Pezzillo (202)-675-6984聽r.pezzillo@hemophiliafed.org Link to PDF of聽World Hemophilia Day聽 Washington, DC– Today, Tuesday, April 17, tens of thousands of families across our nation and around the world are celebrating World Hemophilia Day to raise awareness of bleeding disorders. “World Hemophilia […]

Press Release: HFA Elects New Executive Board During Symposium

April 12, 2012

HFA Elects New Executive Board During Symposium FOR IMMEDIATE RELEASE: April 12, 2012 Contact: Richard Pezzillo (202)-675-6984聽r.pezzillo@hemophiliafed.org Link to PDF of HFA Elects New Executive Board Washington, D.C. – During their recent annual Symposium in Santa Clara, California, the Hemophilia Federation of America’s (HFA) Board of Directors named Matthew T. Compton as the new board […]

Press Release: HFA Begins Accepting Applications for Items Program

April 3, 2012

Link to PDF of聽HFA Begins Accepting Applications for Items Program HFA Begins Accepting Applications for Items Program聽 Items Program Reimburses for Medically Necessary Items FOR IMMEDIATE RELEASE 聽April 3, 2012 Washington, D.C. – Today, Hemophilia Federation of America’s (HFA) Helping Hands Emergency Assistance Program began taking applicants for the Bleeding Disorder Items Program — a […]

Press Release: 2nd Anniversary of Affordable Care Act (ACA)

March 23, 2012

Link to PDF of 2nd Anniversary of Affordable Care Act HFA Celebrates 2nd Anniversary of Affordable Care Act FOR IMMEDIATE RELEASE March 23rd, 2012 Washington, D.C. – Today marks the two-year anniversary of the passage of the Affordable Care Act, landmark legislation to reform our health care system in ways that lower costs and expand […]

Prese Release: March is Hemophilia Awareness Month

March 12, 2012

Link to PDF of Hemophilia Awareness Month Press Release FOR IMMEDIATE RELEASE March 12, 2012 HFA Celebrates National Hemophilia Awareness Month March is Designated to Create Public Awareness about Bleeding Disorders Washington, D.C. – In 1986, President Ronald Regan designated the month of March as Hemophilia Awareness Month to bring awareness and attention to those […]

Press Release: HFA Recognizes Rare Disease Day

February 28, 2012

Link to PDF of Rare Disease Day Press Release Hemophilia Federation of America Recognizes Rare Disease Day February 29th, 2012 Marks the Fifth International Rare Disease Day Washington, D.C. – The Hemophilia Federation of America (HFA) will join the National Organization for Rare Disorders (NORD), and others around the world in observing Rare Disease Day […]

Forbes: The 10 Most Expensive Common Medical Conditions

February 25, 2012

Over the course of a year two out of every 1,000 people will rack up $100,000 or more in medical bills. These are the 鈥渉igh cost patients鈥 who make insurance premiums go up and bedevil policy makers. These are people who are really sick. The conventional wisdom is that with better prevention, wellness, care-coordination, insurance […]

HFA Receives $7,250 United Way Grant

February 16, 2012

Official Press Release Funding Will Help Support FitFactor Initiatives Washington, D.C. – The Hemophilia Federation of America (HFA) today announced that the United Way of The National Capital Area has issued a $7,250 grant to help support their FitFactor program in collaboration with one of their local member affiliate chapters, the Hemophilia Foundation of Maryland […]

HFA Press Release: New Staff

February 9, 2012

Link to PDF of New Staff Press Release HFA Office Welcomes New Additions to Staff Washington, D.C. – The Hemophilia Federation of America (HFA), is pleased to announce four new additions to their staff: Jane Cavanaugh Smith, Matthew Landseadel, Pat Brown, and Richard Pezzillo. “Despite the difficult economy, HFA continues to grow and build as […]

Rare Disease Day

February 8, 2012

Celebrate Rare Disease Day on February 29th 2012! HFA is a proud partner of NORD, the National Organization for Rare Disorders.

TX Bleeding Disorders Advisory

December 5, 2011

HFA Board Member Lew Collins has been appointed to the Texas State Bleeding Disorders Advisory Council. According to the Texas Department of State Health Services (DSHS) this advisory council will oversee: 1) public use data, outcome data, and other information submitted to or collected by DSHS related to hemophilia or other bleeding or clotting disorders; […]

World AIDS Day

December 1, 2011

Today, December 1 is observed as World Aids Day. Established in 1988 by the World Health Organization, this day is established to ensure renewed and continual attention to the threat posed by HIV-AIDS. It is estimated by the Centers for Disease and Control that over 1 million people in the United States are currently living […]

Access to HCV Therapy

November 29, 2011

Next Push – Advanced Therapy Our Citizen Petition to the FDA in 2009 (with amendment), asked for recognition of the HCV crisis in our community and it requested the earliest possible access to advanced HCV therapies.聽 We have made substantial progress in moving regulatory policy toward appropriate urgency. However, as advocates and patients, we are […]


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