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News & Perspectives

What is Helping Hands?

January 5, 2017

By Elaine Chan, MSW, MPH At any point, families living with a bleeding disorder can experience financial hardship because of their medical situation. HFA鈥檚 Helping Hands Program has become a safety net for thousands of families throughout the years. Helping Hands has provided many families with assistance for expenses like housing, utilities, and transportation. In […]

Infusing Love: Smells and Sounds

January 4, 2017

The senses of sound聽and smell are very powerful. Sometimes a smell can spark a memory of a wonderful meal simmering on a stove or the smell of the air from a perfect breeze on a spring day can transport us back. The sounds of elevators dinging as people anxiously wait their turn and the sliding […]

FitFactor: Toast for Good Health鈥ith Tea!

January 1, 2017

Now that winter is in full swing and the cold weather is upon us, it can be easy to forget to stay hydrated. However, just because you don鈥檛 feel thirsty, doesn鈥檛 meant your body has as much water as it needs. An easy way to hydrate (and to warm up) is by drinking tea. It […]

Shire’s Adynovate Receives Two New FDA Approvals for Treatment of Hemophilia A

December 29, 2016

Note: The following is edited from a press release from Shire. Read the full press release in it鈥檚 entirety聽here. Shire plc recently announced that the U.S. Food and Drug Administration (FDA) has approved Adynovate, an extended circulating half-life recombinant Factor VIII treatment for hemophilia A, in pediatric patients under 12 years of age. The FDA […]

Infusing Love: Naughty or Nice 鈥 It鈥檚 a Choice

December 28, 2016

One of my co-workers often uses the phrase unconscious incompetence. It essentially means you just don鈥檛 know what you don鈥檛 know. The recent election surprised many. I鈥檒l stay away from the politics but I can鈥檛 help but reflect on the flippant comments made by a constitutional law professor post-election who referred to those who were […]

Dear Addy: New Years Resolution

December 26, 2016

Dear Addy, My new year鈥檚 resolution is to be a stronger advocate for the bleeding disorders community. How do I reach people and where can I find information to share? Signed, Want to Be the Change Dear Change, You came to the right place! HFA has several resources available for people to increase their awareness […]

Genentech Meets Primary Endpoint for Phase III Emicizumab Study

December 22, 2016

______________________________________________________________________________ Note: The following is edited from a press release from Genentech. Read the full press release in it鈥檚 entirety聽here. Genentech, a member of the Roche Group, announced that the primary endpoint has been met for the Phase III HAVEN 1 study evaluating emicizumab prophylaxis in people 12 years of age or older with hemophilia […]

Octapharma Presents Phase III NuProtect Data at 2016 ASH Annual Meeting

December 22, 2016

______________________________________________________________________________ Note: The following is edited from a聽press release from Octapharma. Read the full press release in it鈥檚 entirety聽here. At the recent American Society of Hematology (ASH) Annual Meeting, Octapharma presented interim data from the ongoing phase 3 study,聽NuProtect. The NuProtect Study examines the immunogenicity, efficacy and safety of treatment with human cell-line derived recombinant […]

Infusing Love: Nuestra Responsabilidad Como Padres

December 21, 2016

Sin darnos cuenta muchas veces queremos 鈥渁yudarles鈥 y hacemos las cosas por ellos. Ahh que mucha paciencia tenemos que tener.聽聽 Debemos ser conscientes de que en el futuro ellos necesitan hacer las cosas por si solos. Debemos comenzar a temprana edad, a darles responsabilidades de acuerdo a sus capacidades y edades. Pero, la etapa de […]

HFA Awards 2016 Educational Scholarships

December 16, 2016

Each year, HFA awards scholarships to promising students in the bleeding disorders community. A total of four scholarships ranging from $2,000 to $4,000 is awarded in these three categories: Educational Scholarship Two educational scholarships were awarded in the amount of $2,000 each to students with a bleeding disorder who were seeking a post-secondary education from […]

Infusing Love: Growing Up So Fast

December 14, 2016

  This week鈥檚 Infusing Love entry is a poem co-written by our longtime blogger, Kari, and her daughter, Scarlett. I’m learning to be safer, watch my step, and stay out of harms way. Each day a new lesson, on how to exercise and how to play! I might start off feeling intimidated, scared or shy. […]

UniQure Announces New Data in Phase I/II Clinical Trial

December 12, 2016

______________________________________________________________________________ Note: The following is edited from a press release from UniQure. Read the full press release in it鈥檚 entirety here. UniQure announced new and updated results during the American Society of Hematology (ASH) meeting聽in relation to its ongoing, dose-ranging Phase I/II trial of AMT-060. AMT-060 is UniQure鈥檚 proprietary, investigational gene therapy聽for patients with severe […]

Sangamo Biosciences Announces Plans to File for New Investigational Drug

December 12, 2016

______________________________________________________________________________ Note: The following is edited from a press release from Sangamo Biosciences. Read the full press release in its entirety here. Sangamo Biosciences presented data during the recent American Society of Hematology (ASH) Annual Meeting regarding preclinical and manufacturing data of SB-525, its gene therapy program for hemophilia A. “We have developed an improved […]

Spark Therapeutics Shares Updated Phase I/II Clinical Trial Data

December 12, 2016

______________________________________________________________________________ Note: The following is edited from a press release from Spark Therapeutics. Read the full press release in it鈥檚 entirety here.. Spark Therapeutics and Pfizer announced updated results from the Phase 1/2 study of SPK-9001, an investigational recombinant gene transfer product in hemophilia B, at the 58th American Society of Hematology (ASH) Annual Meeting, […]

Alnylam Presents Phase I Clinical Drug Trial Data at ASH 2016

December 12, 2016

聽 Note: The following is an excerpt from a press release from Alnylam Pharmaceuticals, Inc. regarding news from their recent presentation at the American Society of Hematology (ASH) Annual Meeting. The original article can be read in its entirety here. ______________________________________________________________________________ Alnylam Pharmaceuticals, Inc. presented data from the phase 1 study of fitusiran at the […]

Dear Addy: Giving Back

December 12, 2016

Dear Addy, I want to give back this holiday season, but I鈥檓 not sure how. Can you recommend ways to be more involved in my community? Signed, Inspired to Serve _____________________________________________________________________________________________________________________________________________________________ Dear Inspired, The holiday season is a good time to reflect on giving to a cause or serving those in need. There are many […]

Infusing Love: Taking a Stand

December 7, 2016

  Every day we advocate for our children and ourselves. Our advocacy ranges on a small scale such as requesting a drink refill when we need one at restaurant to advocating for our children on a larger scale when requesting a doctor to infuse your child before any sort of x-ray when in an emergency […]

FitFactor: How Does Your List of Healthy Foods Compare with a Nutritionist鈥檚?

December 5, 2016

Do you feel that your views of what鈥檚 healthy align with the views of the experts? The New York Times published an interesting article a few months ago about public perception of what is 鈥渉ealthy鈥 and how these have changed over time. The study also highlighted what foods nutritionists believe to be the healthiest (and […]

Infusing Love: A Boy & His Dog

November 30, 2016

Thomas had a stuffed animal when he was little. “Dog*” went through a lot with us. He was a constant companion, friend and source of comfort. Dog stayed in the hospital, went to clinic visits and traveled with us. We would literally pack factor for an ER visit with one hand and grab Dog with […]

Dear Addy: Formularies

November 28, 2016

Dear Addy, I keep hearing the terms formulary and preferred drug list. What do they mean and should I be worried if my current insurance plan has one? What about my friends that have Medicaid? Signed, Informed Consumer ____________________________________________________________________________________ Dear Consumer, A formulary is a list of prescriptions drugs that are covered by a particular […]

Infusing Love: He Needed Me

November 23, 2016

I am exhausted. So very exhausted. I am pleading to myself that there isn鈥檛 something wrong; that the whimpers and small cries I hear as he sleeps aren鈥檛 there and that it is from sleep deprivation. I am drifting in and out of sleep on the baby glider that still graces his room even though […]

Caregiver Heroes: William

November 17, 2016

In honor of National Caregiver Month, we鈥檒l be featuring 鈥淐aregiver Heroes鈥 throughout the month of November. While all in the bleeding disorders community are heroes in their own special ways, these folks are being given a special shout-out for the ways they take care of their loved ones and themselves. Meet William from Tennesse. William […]

Octapharma Announces Two Hemophilia A Clinical Trials Utilizing Wilate

November 16, 2016

The following is excerpted from a press release from Octapharma USA. Read the press release in it’s entirety here.聽 Octapharma USA has announced that WILATE庐, von Willebrand Factor/Coagulation Factor VIII Complex (Human) Lyophilized Powder for Solution for Intravenous Injection will be utilized for two important clinical trials for hemophilia A launching in December. Octapharma USA […]

Infusing Love: Remembering John Reed

November 16, 2016

With the recent passing of John Reed, the hemophilia community lost a true champion. John was so many things to so many different people 鈥 husband, father, blood brother, friend. The list goes on and on, as does the list of adjectives one could use to describe John 鈥 caring, passionate, compassionate, smart, dedicated. I […]

Dear Addy: Open Enrollment for New Users

November 14, 2016

Dear Addy, I’m applying for health insurance for the first time this open enrollment period. With a bleeding disorder, what should I look for in an insurance plan? Signed, First-time Subscriber _____________________________________________________________________________________ Dear Subscriber, First, an聽Open Enrollment Period聽is the time during the year when health insurance companies or聽HMOs (health maintenance organizations)聽are required by law to […]

We Are Always Here For You

November 9, 2016

Dear Advocate: After yesterday’s election, there are many questions for the bleeding disorders community. While we don’t have all of the answers, we understand the concerns many have. No matter what your politics are, know that HFA is there for YOU — the bleeding disorders community.聽We offer you our reassurance that we will continue to […]

Infusing Love: Finding His Voice

November 9, 2016

    Recently a friend shared a quote that really resonated with me: 鈥淎 negative mind will never give you a positive life.鈥 I recited that quote at least one hundred times the day she shared it. I even had to find a pretty Google image of the quote, print it off, and hang it […]

Caregiver Heroes: Kelly

November 3, 2016

In honor of National Caregiver Month, we鈥檒l be featuring 鈥淐aregiver Heroes鈥 throughout the month of November. While all in the bleeding disorders community are heroes in their own special ways, these folks are being given a special shout-out for the ways they take care of their loved ones and themselves. Meet Kelly from Nevada, who […]

Infusing Love: Goodbye, My Friend

November 3, 2016

Dear Port: Over the past five years you were a big part of how well I did infusing my son, Laithan. As much as he would fight me during infusions by moving around, I knew that I could always count on you to work. Don鈥檛 blame yourself for having to be removed! In five years […]

FitFactor: The Benefits of Hitting the Weight Room

October 31, 2016

Weight training plays an important role in keeping your body fit and healthy. It鈥檚 a great way for people with bleeding disorders to strengthen muscles and joints and by doing so, reduce the frequency and severity of bleeds. We spoke with Michael Zolotnitsky, Doctor of Physical Therapy, about the benefits of weight training and his […]


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