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HFA News

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 […]

Humor in Your Hemophilia Bag

November 6, 2013

Most moms who have a child with a bleeding disorder know the ER drill. Despite being a veteran, I honestly forget every time how it works. Even in a metropolitan hospital that is affiliated with a hemophilia treatment center, a rare chronic condition like hemophilia is such a novelty with medical teams. We had what […]

M.O.M.

October 30, 2013

              Maryann May, M.O.M.:聽 Those are my credentials, M.O.M. I have been thinking about this for a while now. Over the past few years I have applied for jobs within our hemophilia community and it always seems that the person who gets the job has letters after their name. […]

Dear Addy: Co-Pay

October 29, 2013

Dear Addy, I thought I had a good health insurance. I made sure the deductible was affordable and the monthly premium was within my budget. Unfortunately the co-pay for my medication is causing financial hardship. One dose of my medication arrives in four separate boxes and I have to pay separate $20 co-pays for EACH […]

Community News: Blood Vibrations

October 29, 2013

              Community members Billy Conde Goldman and Matt Tache of Portland, Oregon recently launched Blood Vibrations, an ongoing project gathering music created by people in the bleeding disorders community. The goal of the project is to provide a forum for creativity, expression and sharing. Anyone with a bleeding disorder […]

Healthier Bodies Bleed Less

October 25, 2013

It is important for individuals with bleeding disorders to participate in some form of physical activity.聽 Being physically active helps to strengthen one鈥檚 muscles, bones and joints.聽 One of the many benefits of having a strong healthy body can be a reduction in the number of bleeding episodes an individual might experience.聽 Many in the […]

Patient-Focused Drug Development Initiative Update

October 23, 2013

Dear Member Organizations, As you know, the FDA has recently embarked on a new Patient-Focused Drug Development Initiative, which will include convening 20 disease-specific public meetings to hear directly from patients about their perceptions of risk and benefit when it comes to new and existing treatments. FDA selected bleeding disorders as one of the disease […]

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, […]

Maine to Allow Prescription-Drug Imports

October 9, 2013

AUGUSTA, Maine (Wall Street Journal) 鈥 The hunt for cheaper prescription drugs long has led consumers to reach beyond U.S. borders, but under a Maine law set to take effect Wednesday, their search now will have the state’s blessing. The law, the first of its kind, sanctions the direct purchase of mail-order drugs from some […]

The Elephant in the Room

October 9, 2013

By Kimberly Haugstad Benny had those dramatic finger print bruises that a lot of babies with severe hemophilia get. 聽Moms know the ones: thumb prints in front on each side in middle of ribs, fingerprints in back where you leverage his weight as you pick him up, bruises all over the body.聽 I remember agonizing […]

Infusing Love: The Bullies Won the Battle; Not the War

October 2, 2013

When we send our children off to school, we trust that they will be in the good hands of school staff to keep them safe 鈥 both physically and emotionally.聽 But what happens in the hallways at the lockers or on the playground at recess, when school staff is out of sight or not around […]

Dear Addy: Private Exchange

September 30, 2013

  Dear Addy, I have health insurance through my employer. Next year my employer is giving me a lump sum each month to pay for health insurance on a 鈥減rivate exchange.鈥 What does that mean? Signed, Month-to-Month _________________________ Dear Month, Private exchanges are online marketplaces that allow employers to offer their employees a range of […]

Infusing Love: Keeping “Watch”

September 25, 2013

We were at the park on one of the few sunny days that seem to permeate a cloudy, dreary month of June in Minnesota when I heard a women commenting about the 鈥渨atch鈥 on my son鈥檚 arm. 聽聽I looked down at Logan鈥檚 wrist, and felt comforted seeing his medical alert bracelet firmly in place, as […]

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 […]

Dear Addy: Marketplace Enrollment

September 23, 2013

Dear Addy, I am self-employed and need health insurance. When can I enroll in the Marketplace plans and when will this coverage start? ~Self-Employed 聽_____________________ Dear Self-Employed, You can apply for health insurance on the Health Insurance Marketplace when open enrollment starts on October 1, 2013. Coverage under Marketplace plans starts as soon as January […]

A Family’s Struggle with vWD

September 20, 2013

I am a single mom of three; all with special needs.聽My son has severe speech problems, my youngest daughter has mild von Willebrands, and oldest daughter has severe von Willebrands, food allergies, and experiences seizures. My daughter’s frequent and heavy nose bleeds lead聽doctors to perform four surgeries on her nose. My daughter was not responding […]

Infusing Love: Prepared for Anything

September 18, 2013

Being prepared took on a new meaning after having Max. It’s frightening and frustrating to know your child is hurt, but the key is to remain calm. Whether you’re on a trip or stranded in your own home, it never solves anything to panic. For me, the hardest part of adjusting to hemophilia was what […]

Dear Addy: Individual Mandate

September 16, 2013

Dear Addy, I just turned 27 and have lots of debt. Instead of purchasing health insurance, I would rather use the money I make to pay down what I owe. I have mild hemophilia and I have not had a bleed in a year. Do I still need to have health insurance under the new […]

Guilty As Charged

September 11, 2013

Snakes can be poisonous. I have tried desperately to avoid them since I was about eight years old and was innocently climbing a tree and one slithered up next to me. 聽I don’t always succeed. Guilt is also poisonous. 聽I have tried desperately to avoid it since Thomas was born. I don’t always succeed. This […]

Study Finds H.R. 460 Will Have Negligible Impact on Insurance Premiums

September 10, 2013

Washington, DC – A bill to protect access to medically necessary treatments for patients with chronic, disabling, and life-threatening conditions would not significantly increase medical insurance premiums according to a study released today by the Coalition for Accessible Treatments. The Coalition, composed of professional medical associations and patient organizations, commissioned the study, which was conducted […]

We’re All In This Together

September 4, 2013

聽By Sonji Wilkes I never could have imagined that hearing the words, 鈥淭homas has severe hemophilia,鈥 would equate to being thrust into a world of inspirational people and unexpected acts of kindness.聽 When Thomas was diagnosed and the doctor asked, 鈥淒o you have a good insurance plan?鈥 my mind immediately focused on the challenges we […]

Dear Addy: Essential Health Benefits

September 3, 2013

Dear Addy, I am worried that my employer will stop offering health insurance to save money and send me to the Marketplace to get coverage. Is this true and, if so, should I be worried about finding good coverage? Signed, Worried & Seeking Truth ________________________ Dear Worried, The answer to your first question is maybe, […]

Nia Technique: Working IN by Working OUT

August 30, 2013

If you have been hanging out with HFA鈥檚 FitFactor 聽for very long, by now you know their motto, 鈥渉ealthy bodies bleed less鈥… and it鈥檚 TRUE! Doctors specializing in bleeding disorders stress that consistent exercise can prevent or reduce bleeding by strengthening muscles and vulnerable joints for hemophiliacs of all ages.聽 In fact, whether you have […]

A Long Hospital Stay

August 29, 2013

We are all in this Together鈥 鈥淭hank you to all that make the Helping Hands program possible. Thank you for helping our family.鈥 My youngest son has severe hemophilia A. He bleeds internally very frequently and lives in a lot of pain.聽 He misses 5-7 days of school each month because of his constant bleeds, […]

Infusing Love: Mom: On My Nerves, But Always Has My Back

August 28, 2013

One of the ways many moms have learned the most about raising a child with hemophilia is by talking with our community鈥檚 鈥淏lood Brothers,鈥 the guys who have grown up and moved away from home, whether they be in college or have grandchildren of their own.聽 These men are able to give it straight about […]

FitFactor Video: Running/Walking – Finding Success

August 23, 2013

  The mental aspect of running is half the battle. This final聽video in the series聽will inspire you to set realistic goals, and determine the best approach to incorporating running or walking into your weekly/daily wellness routine. 聽So get on board, set short and long-term goals, and feel good about getting fit!!聽 FitFactor is here to […]

Infusing Love: The ABC鈥檚 of Hemophilia

August 21, 2013

My son, Jackson, will enter kindergarten this fall. Some parents are happy for this new journey and some are dreading it; either they aren鈥檛 ready for their child to grow up or their child has a chronic illness and they are fearful of the unknown. I鈥檓 a mix of all of the above. Jackson is […]


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