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Infusing Love: Your Spark Is My Why

April 25, 2018

Every year at Symposium, there is some special moment that defines that year’s event for me. As we kick off our 2018 event tomorrow, I’m reflecting back on my favorite memories from the last five years of Symposium: 2013: Frisco, TX (I actually have two favorite memories from this year.)   This picture encapsulates our […]

Dear Addy: Symposium

April 16, 2018

Dear Addy, I’m attending HFA’s Symposium next week and I’d like to gather information about personal and legislative advocacy to bring back to my community. What sessions do you recommend I attend? Signed, Planning Ahead Dear Planner, It’s great to hear you will be attending Symposium in Cleveland! This year, we have expanded our advocacy […]

Infusing Love: My Love/Hate Relationship

April 11, 2018

Some of us love exercise.  Some of us (me!) hate it but love it when you’re done.  What do you find to be the hardest part of exercising? A lot of times it’s finding the time. As moms we’re pulled in a thousand different directions all throughout the day.  Between jobs, kids, and spouses, there is never […]

FitFactor: Breaking the Vicious Cycle: Investing Prophylactic Factor Use in Functional Body Mass

April 3, 2018

The importance of physical activity for everyone’s health, particularly those of us with bleeding disorders, cannot be overstated. Exercise builds lean muscle mass, manages our body weight and improves our heart and lung efficiency. Participating in a variety of physical activities from weight bearing exercises to cardio training is important as each one offers different […]

Dear Addy: Building Relationships

April 2, 2018

Dear Addy, How can I maintain relationships with my legislators after participating in an advocacy day? Signed, Building for the Future Dear Builder, It’s great to hear you are thinking ahead to what’s next! Building relationships with your legislators is an important advocacy strategy and there’s a lot you can do from home and throughout […]

Infusing Love: Plenty to Keep Her Busy

March 28, 2018

When Scarlett was diagnosed with platelet storage pool disorder in 2011 the doctors told me she wouldn’t be able to play most sports. As she went from toddlerhood to adolescence the restrictions seemed endless and it felt like she was never going to find any after school activities that she would enjoy. It was obvious […]

Genentech Medical Communications Line Available to Answer Questions About Hemlibra 

March 27, 2018

HFA was informed by Genentech on March 26, 2018, that a total of five patient deaths have occurred while the patients were using Hemlibra (emicizumab-kxwh). Genentech has little information that they can presently share about the circumstances surrounding the most recent patient deaths; however, Genentech could confirm that the patients had received Hemlibra as part of compassionate use and expanded patient access. Genentech has a Medical Communications line at 1(800)-821-8590 for patients, concerned community members, and healthcare providers who seek further information. […]

Dear Addy: Op-ed

March 22, 2018

Dear Addy, I’ve heard writing an op-ed for my local newspaper is a good way to spread awareness about bleeding disorders. I’d like to submit a piece during Bleeding Disorders Awareness Month. Can you offer tips for submitting my story? Signed, Ready-to-Write Dear Writer, Writing an op-ed or opinion piece is a great way to […]

Reposting: HFA & NHF Issue Joint Statement Regarding Shire Lawsuit Against Genentech/Roche

March 21, 2018

[Reposted from January 16, 2018] In the past few weeks, we have received many inquiries regarding the scope of the injunction Shire is seeking in its lawsuit against Genentech/Roche. Certain information has become public during this period that enables NHF and HFA to provide some limited guidance as to the scope of the injunction that […]

Infusing Love: Life’s Little Surprises

March 14, 2018

My family has very quiet about our family history with hemophilia. I was 2 years old when my grandfather passed away, so I knew very little about what he went through or what it meant to be a carrier, other than the result could be having a son with hemophilia. I was excited when we […]

FitFactor: Kick March Off Right with Balanced Meals

March 5, 2018

Not only is March Bleeding Disorders Awareness Month, but it has also been designated National Nutrition Month! Take this time to evaluate your current eating habits. How many healthy foods are you eating consistently? What are you lacking? Do you eat too much of one thing? There is always room for improvement when it comes […]

Dear Addy: Bleeding Disorders Awareness Month

March 5, 2018

Dear Addy, I’ve seen HFA’s Facebook posts about Bleeding Disorders Awareness Month. Can you tell me more about it and how I can get involved? Signed, Attentive Advocate Dear Attentive, For more than 30 years, the bleeding disorders community celebrated March as the unofficial Hemophilia Awareness Month. In 2016, this designation become official when the […]

Infusing Love: Talk With Your Children

February 28, 2018

Disclaimer: At HFA, we value all opinions. This blog only reflects only the opinion and experiences of the individual mother/writer. We encourage you to talk with your children about a school safety plan, and have provided a resource at the end of this blog entry. ________________________________________ Around 11 AM, on April 20, 1999, in Littleton, […]

Dear Addy: Bullied for Bruising

February 20, 2018

  Dear Addy, My eleven-year-old son recently shared that he’s being bullied at school because of bruising caused by his bleeding disorder. How can I help him educate his classmates about hemophilia and prevent future bullying? As much as I want to protect my son, I also know that I need to empower him to […]

Infusing Love: Am I a Carrier?

February 14, 2018

Does life ever make sense? Do we really know the answers to why things actually happen? Losing my daughter, Sydney, nine days shy of her second birthday due to SUDC (Sudden Unexplained Death in a Child), pretty much means there is no answer to why. But my family decided to welcome another child into the […]

FitFactor: Functional Training – Strengthen Joints and Muscles to Improve Everyday Movements

February 5, 2018

Functional training exercises train your muscles to work together and prepare you for daily tasks by simulating common movements you might do at home, at work or in sports. By using basic movement patterns like pushing, pulling, squatting and carrying, you build stability, strength and mobility that will in turn help with your daily movements. […]

Dear Addy: Legislative Day Toolkit

February 5, 2018

Dear Addy, I’m participating in an Advocacy Day with my local bleeding disorders organization this month. I have limited experience with legislative advocacy and it’s been a long time since I took a civics class! Could you share insight on what to expect and how to prepare? Signed, Proactive Participant Dear Participant, This is a […]

Octapharma Support Enables Bombardier to Climb Mount Vinson, Becoming First Hemophiliac to Ascend the Seven Summits

January 24, 2018

Note: The following is an excerpt from a press release from Octapharma USA. Read the full press release here. Octapharma Partnership with Mountain Climber will Culminate with Release of Documentary Bombardier Blood Later This Year Mountain climber Chris Bombardier of Denver, Co., became the first hemophiliac to climb the Seven Summits of the world on […]

Infusing Love: Relating to ‘Wonder’

January 24, 2018

When I committed to writing this week’s blog, I had no idea what I would blog about until I went to see the movie ‘Wonder.’ Wonder is about a boy named Auggie who was born with a facial disease called mandibulofacial dystosis, also known as “Treacher Collins syndrome.” Due to Auggie’s medical needs, which require the […]

Hemophilia Puts Damper on Patients’ Sex Life and Health Status, Study Reports

January 23, 2018

Study Shows Sexual Intimacy Correlates With More Bleeds The following is an excerpt from Hemophilia News Today. Read the entire article here. Researchers report that hemophilia interferes with patients’ sexual activity and is linked to worse health status. The study titled “Sexual Health in Patients with Hemophilia; The Insights from the Patient Reported Outcomes, Burdens and Experiences […]

Dear Addy: Project CALLS 2018

January 19, 2018

Dear Addy, I’m already experiencing problems with my insurance in the new year. Where can I go to report these issues? Signed, New Year, Old Issues Dear New Year, You are not alone. HFA regularly hears from community members with concerns about access to care due to limitations or mandates set by their insurance company. […]

Infusing Love: Ayudando Nuestras Familias

January 16, 2018

Puerto Rico, Isla del encanto, conocida por sus bellas playas, gente amigable y amable, en donde se baila la mejor salsa y se degustan los mejores sabores caribeños. Arropada por el Mar Caribe y el Océano Atlántico. En donde se habla español y es un territorio ligado a Estados Unidos como Estado Libre Asociado y […]

Consolidated Postings Regarding Shire’s Lawsuit Against Genentech/Roche

January 16, 2018

In an effort to provide the hemophilia community a centralized location to find the most up-to-date statements and press releases regarding a recent injunction Shire is seeking in its lawsuit against Genentech/Roche, HFA will publish links on this page. As a reminder, HFA will NOT engage in the dialogue around patent ownership and will not be […]

Shire Provides Statement Regarding Lawsuit

January 16, 2018

Shire has published a statement regarding the ongoing lawsuit Shire has filed against Genentech/Roche. Read the full statement in its entirety here.    

HFA and NHF Issue Joint Statement Regarding Shire Lawsuit Against Genentech/Roche

January 12, 2018

In the past few weeks, we have received many inquiries regarding the scope of the injunction Shire is seeking in its lawsuit against Genentech/Roche.  Certain information has become public during this period that enables NHF and HFA to provide some limited guidance as to the scope of the injunction that Shire has requested from the […]

Genentech Provides Statement Regarding Patient Access to Hemlibra

January 11, 2018

Genentech has published a statement regarding patient access to Hemlibra (Emicizumab-kkwh). Read the full statement in its entirety here.  

Fit Factor: Inspiring Fitness Stories to Get You Going in 2018

January 9, 2018

Below, we’ll introduce you to three such people: Trevor Dunn, a young man with von Willebrand Disease, Dawn Evans, an adult woman who is asymptomatic carrier of Hemophilia A, and Barry Haarde, an adult male with severe Hemophilia A.  All of them have discovered a form of physical activity that is enjoyable and adaptable to […]

PSI Files Lawsuit Against U.S. Department of Health and Human Services

January 9, 2018

On January 9th, Patient Services, Inc. (PSI) filed a lawsuit against the Federal Government alleging that a 2017 Modified Advisory Opinion from the Office of the Inspector General (OIG) violates their First Amendment rights. For more information, please see the press release from PSI.

Dear Addy: Accumulator Adjuster Programs

January 8, 2018

Dear Addy, I get assistance with my out-of-pocket costs from the manufacturer of my clotting factor product. My insurer just notified me that it will no longer apply that assistance to my deductible and out-of-pocket maximums! Can they do that? Signed, Distressed Over Deductibles Dear Deductibles, You are running up against a new strategy that […]

Infusing Love: Port to Adulthood

January 3, 2018

I have seen signs for the last few years, but on a cold day just before Christmas, I saw my 14-year-old son not as a little boy, but as a young man. There wasn’t anything extraordinary happening in the moment. He sat at one end of our sectional couch and I was sitting on the […]


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