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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 […]

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 […]

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 […]

A Caregiver’s Perspective: My Life As I Know It

January 9, 2014

My husband has a bleeding disorder called hemophilia. Prior to beginning a relationship with him, I did not have an understanding of hemophilia and the intrusive nature it can have on someone鈥檚 life and marriage. My minuscule understanding of hemophilia only consisted of someone 鈥渂leeding a lot鈥 if they had an open wound. It was […]

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 […]

A 504 Plan Can Help Protect Your Child

November 19, 2013

I’m just like any other father when it’s time for my children to go back to school鈥攕o excited! All kidding aside, transitioning back to school can be difficult for everyone if you’re not prepared. When it comes to the extra challenges our kids with bleeding disorders face, the added stress can become an even larger […]

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 […]

Are You Prepared for the Healthcare Insurance Marketplace?

November 11, 2013

The countdown to the launch of the new online Health Insurance Marketplace is on. Are you ready? If you, like many Americans, have questions about what the Marketplace is and what it does, there are excellent resources available to help answer these questions. Here are some of the most frequently asked questions: 鈥淭he Marketplace鈥 The […]

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, […]

Hepatitis C: Our History and Advances on the Horizon

August 8, 2013

Recognizing National Hepatitis Awareness Month The month of May is recognized to bring awareness around those living with viral hepatitis. The awareness effort encourages people to get tested for hepatitis and to evaluate treatment options. According to the Centers for Disease Control and Prevention (CDC), an estimated 3.2 million people in the U.S. with chronic […]

Come On In, the Water is Fine

August 1, 2013

At Symposium, I wore the same socks for two days in a row, I stayed up four hours past my normal bedtime every night, and I finally realized that I needed to brush my teeth at exactly 7:21 am on Friday鈥 I was like a young child at Symposium: so completely engrossed in everything going […]

Member Spotlight: Hemophilia Alliance of Maine

July 30, 2013

Of all seemingly innocuous topics, I was recently surprised to find hiking caught in the middle of a most persnickety online debate. In one thread, athletic enthusiasts hastily poured their auto correct failing hearts out over how 鈥淭he Hike鈥 should be categorized: a recreation or a sport? While the comments proved a riveting form of […]

Responding to Challenging Circumstances

July 25, 2013

By Sadaf Ahmad HFA鈥檚 Helping Hands Program is an urgent financial assistance program that provides aid to individuals and families to assist in crisis situations with expenses such as housing, transportation, and utility bills. HFA conducted a survey of Helping Hands (HH) applicants to understand the program鈥檚 impact and assess the experiences of the most […]

Don’t Be Afraid To Ask Questions!

July 18, 2013

As a patient or a parent of a child with a bleeding disorder, you may, at some point in time, have the opportunity to make a decision to participate in a clinical trial for a new factor product, a research project, or the genotyping project. This decision should not be taken lightly. All your questions […]

Talking to Your Provider About Pain

June 4, 2013

People living with a bleeding disorders know a thing or two about pain. Many with聽arthritis report having to wait until their body “loosens up” before they can begin their day. There鈥檚 also the pain you may feel after a particularly busy day when you’ve been on your feet, and that joint that always bothers you […]

Community Voices: Taking Control of Your Health

May 30, 2013

聽鈥淭he only thing standing between you and your goals are the excuses you keep telling yourself as to why you can鈥檛 achieve them.鈥 鈥 Unknown Maintaining a balanced diet, staying physically fit, and managing stress are important for everyone, especially those living with a bleeding disorder. A regular, safe exercise program protects the joints, and […]

Poorly Understood: Women and Bleeding Disorders

May 9, 2013

While bleeding disorders like hemophilia and von Willebrand Disease (vWD) affect men and women, these conditions present unique issues for women because of heavy or abnormal bleeding during menstrual cycles and after childbirth. Many areas crucial to the diagnosis and treatment of bleeding disorders in girls and women are poorly understood. According to the CDC, […]

Medicaid Expansion in Your State

April 18, 2013

聽 The Medicaid program is a federal and state partnership to provide health insurance for those who are financially and medically needy. It is a vital safety net in our health care system. Federal law sets a baseline of eligibility categories for states to follow, but states have the flexibility to cover above that baseline […]

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 […]


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