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Infusing Love: We Keep on Ticking

April 6, 2016

My first national bleeding disorder conference was in New Orleans in 1998. I was overwhelmed at the over 2,000 individuals in attendance.聽My son was two and the enormity of hemophilia hit me hard when I saw men in wheelchairs, using walkers, and not moving their limbs with ease. What in the world was really in […]

Recipe: So Easy Slow Roasted Salmon

March 29, 2016

Being at a healthy weight is an important step for people with a bleeding disorder to take in order to maintain healthy joints. Eating a diet that includes a variety of clean, natural foods is a great way to get to or maintain a healthy weight.聽Following the MyPlate guidelines a healthy diet should include plenty […]

Qualitative Platelet Disorder: We Just Don’t Quite Fit In

March 15, 2016

Patrick is a typical 12 year old who happens to have a rare bleeding disorder called, qualitative platelet disorder; the diagnosis is descriptive rather than specific – we have been told it is a one in a million condition and they do not know why his platelets do not function properly. We also don鈥檛 know […]

FitFactor: Eat Healthier with MyPlate

February 26, 2016

In an effort to make healthier food choices easier to understand, the U.S. Department of Agriculture created 聽a simple and聽familiar visual, that would be easy to remember and use, a place setting.聽 MyPlate is a reminder to find your healthy eating style and build it throughout your lifetime. Everything you eat and drink matters. The […]

HFA Observes February 29 As Rare Disease Day

February 23, 2016

The Hemophilia Federation of America (HFA) joins the National Organization for Rare Disorders (NORD) on February 29, and others around the world in observing Rare Disease Day. The purpose of this day is to focus attention on the needs of patients and families affected by rare diseases. In the U.S., any disease affecting fewer than […]

Zika Virus and the Blood Supply

February 4, 2016

We鈥檝e recently received questions from the bleeding disorders community about the Zika Virus and the possibility of transmission via the blood supply. Zika is primarily transmitted through the bite of infected Aedes mosquitoes, the same mosquitoes that spread Chikungunya and dengue. HFA has been in contact with the Centers of Diseases and Control (CDC) and […]

New Dietary Guidelines for Americans

January 15, 2016

Last week, the U.S. Departments of Health and Human Services and Agriculture聽released the聽2015-2020 Dietary Guidelines for Americans.聽The Dietary Guidelines for Americans is聽a trusted resource for evidence-based nutrition recommendations and serves to provide the general public, as well as policy makers and health professionals with the information they need to help the public make informed choices […]

10 Healthy Holiday Hints to Hit the New Year Right

December 22, 2015

The holidays are upon us, and staying healthy during this season can be challenging.聽 While this is true for the general population, it is especially important for individuals with hemophilia or other bleeding disorders.聽 We understand the importance that activity and a聽healthy diet play in maintaining an ideal聽weight and decreasing the number of bleeding episodes […]

Arsia and Biogen Team Up to Develop Sub-Q Hemophilia Treatment

December 16, 2015

Note: The following is an edited press release from Arsia Therapeutics, Inc. The original release can be read here. Arsia Therapeutics, Inc., a Cambridge based company, announced a collaboration with Biogen on December 16, 2015. Arsia and Biogen will focus on providing meaningful treatment administration improvements for hemophilia patients by enabling subcutaneous versions of treatments […]

Kids Healthy Eating Contest!!

December 11, 2015

聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽 Show Us Your #HFAStrong Kids! The holidays are upon us once again! Tis the season for recipe cards coming out of the cabinets, eating,聽regular trips to the grocery store, eating, healthy New Years resolutions and yes, eating!聽聽 Do you have a budding chef or nutrition expert in your home?聽Do they like to see themselves […]

FDA Approves First Recombinant von Willebrand Factor

December 8, 2015

The U.S. Food and Drug Administration today approved Vonvendi, von Willebrand factor (Recombinant), for use in adults 18 years of age and older who have von Willebrand disease (VWD). Vonvendi is the first FDA-approved recombinant von Willebrand factor, and is approved for the on-demand (as needed) treatment and control of bleeding episodes in adults diagnosed […]

Cooking Safely with Slow Cookers

November 14, 2015

The crisp fall air means its time to pull out the slow cooker and whip up those comfort foods that leave us feeling warm and toasty.聽 It is important to keep in mind healthy eating聽when reaching for the comfort food recipes which can often be high in fat and sodium. A healthy diet includes the […]

Dear Addy: Biosimilars

November 9, 2015

Dear Addy, I keep hearing about biosimilars. What are they, and how do they differ from generic drugs? Sincerely, Curious About Products Hi Curious, Thanks for your question. A biosimilar is a pharmaceutical drug that is made to have similar active properties as a biological drug that has already been licensed. Biologics are really important […]

HFA Receives Donation of VeinViewer Flex

November 4, 2015

Christie Medical Holdings Inc., a global leader in portable vein imaging systems to aid in venipuncture procedures, has donated a VeinViewer庐 Flex to the Hemophilia Federation of America (HFA) as part of the Christie CARES philanthropy program. Based in Washington, D.C., the Hemophilia Federation of America serves as a consumer advocate for safe, affordable and […]

FDA Approves First Factor X Concentrate for Treatment of a Rare Hereditary Bleeding Disorder

October 21, 2015

Note: The following is an edited version of a press release originally published by the US Food and Drug Administration (FDA). The original release can be read here. The U.S. Food and Drug Administration announced on Tuesday, October 20, 2015, the approval of 聽Coagadex, Coagulation Factor X (Human), for hereditary Factor X (10) deficiency. Until […]

Soup Recipe: Skinny New England Clam Chowder

October 20, 2015

The fall and winter months can become challenging when trying to maintain a healthy diet and exercise routine.聽 Colder temps force workouts indoors and comfort foods tend to become more of a main staple at the dinner table.聽 Eating nutritious meals and snacks is so important to people with bleeding disorders.聽 A variety of vitamins […]

HFA Recognizes International Plasma Awareness Week

October 11, 2015

HFA joins Plasma Protein Therapeutic Association (PPTA) and its other Member Companies sponsor the second International Plasma Awareness Week (IPAW) to be celebrated globally October 9-15, 2016.聽This event is held annually and is designed to: Raise global awareness about source plasma collection Recognize the contributions of plasma donors to saving and improving lives Increase understanding […]

Get Behind “Gears for Good”

September 24, 2015

It鈥檚 not too late to make a difference! The Gears for Good bike ride is this Saturday, September 26th, 2015. 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 […]

New Study Open To Hemophilia B Community

September 24, 2015

Novo Nordisk, along with the Coalition for Hemophilia B, Hemophilia Federation of America, and National Hemophilia Foundation have announced the B-HERO-S (Bridging Hemophilia Experiences Results and Opportunities into Solutions) study open to all patients with hemophilia B and the caregivers of children with hemophilia B. About the Study Building on the success of the original […]

Helping Hands: Housing Expenses

September 8, 2015

In 2014, HFA’s Helping Hands program assisted聽275 households聽and distributed over聽$124,00 in direct aid to families in the bleeding disorders community!聽Of those 275 households helped in 2014, we assisted 95聽聽families/individuals聽with their housing expenses. Read how one family benefited from this vital program… I cannot thank Helping Hands enough for what they did for my family. Last […]

Helping Hands: Giving Back to the Community

September 8, 2015

  鈥淭hank you so much for all your assistance. I appreciate all your organization does for the hemophilia community. -Helping Hands recipient About HFA鈥檚 Helping Hands Program:聽 Helping Hands聽is a unique financial assistance program that provides individuals and聽families within the bleeding disorders community with basic living expenses. It聽was designed to be a rapid, non-invasive, temporary […]

How to Bust Stress

September 4, 2015

There are all kinds of reasons someone with a bleeding disorder or a caregiver to someone with a bleeding disorder might feel stress.聽 Aside from the daily stressors that we all feel, there can be added financial pressures, anxiety over treatment, running to appointments, dealing with a bleed, the list goes on and on. Stress […]

Dear Addy: Back to School 2015

September 4, 2015

Dear Addy, My daughter is about to start kindergarten. How should I go about telling the teachers and administrators at her school about her hemophilia?聽 I want them to know how best to respond to any incidents without treating her like a Faberge egg. Signed, Off to School鈥擭ow What?! Dear Off to School, Sending a […]

Living with Hemophilia: A Young Adult Perspective

August 31, 2015

The transition to adulthood is an exciting time for any聽young adult, and can include living on their own for the first time, beginning a job, or starting a college/higher education experience. However, this also means young adults must learn quickly how to juggle the inevitable increase of personal responsibility. Dakota, age 20, is a PharmD […]

2015 Summer Intern Recap

August 7, 2015

Earlier this summer we welcomed our summer policy & advocacy interns to our DC office. Adam and Matthew are part of the bleeding disorders community and were chosen to participate in a 10-week internship because of their leadership qualities and interest in the field of policy and advocacy. Throughout the summer, Adam and Matthew: Gained […]

vWD Recombinant Clotting Protein Shown To Be Effective

August 3, 2015

Note: This is an edited version of a release originally published in聽Blood, the Journal of the聽American Society of Hematology聽(ASH).聽 On August 3, 2015, the journal Blood published聽study data indicating that the first protein engineered to help control bleeding episodes in patients with severe von Willebrand disease (vWD) had been shown to be safe and effective, […]

Infusing Love: Camp Forget-Me-Nots

July 29, 2015

鈥淚 don鈥檛 have a bleeding disorder,鈥 said my oldest daughter, MaRee, last summer after I told her that I was signing her up for a joint teen retreat/camp hosted by Hemophilia of South Carolina and Hemophilia of North Carolina (HSC/HNC). 鈥淚 know you don鈥檛 have a bleeding disorder, but they are allowing siblings to attend.聽 […]

Dear Addy: CHOICE

July 29, 2015

Dear Addy, I keep seeing all of these Facebook posts and Tweets about the CHOICE Project. What is it and why does it matter if I take part? Signed, Need-to-Know Dear Need-to-Know, Glad you asked. CHOICE (Community Having Opportunity to Influence Care Equity) is a project driven by HFA and supported by the Centers for […]

FDA Accepts CSL Behring鈥檚 Application for New Hemophilia Treatment

July 28, 2015

Note: The below is an edited press release from CSL Behring. To read the full release, click here. CSL Behring announced that the U.S. Food and Drug Administration has accepted for review the company鈥檚 Biologics License Application (BLA) for its novel investigational recombinant factor VIII single-chain (rVIII-SingleChain) for the treatment of hemophilia A. In the […]

FDA Clears Two New Oral Drugs for Hepatitis C

July 27, 2015

Note: This article originally appeared on Medscape.聽To read the FDA release on聽Daklinza (genotype 3), click here. For the FDA release regarding聽Technivie (genotype 4), click here. The US Food and Drug Administration (FDA) approved two new drugs today for hepatitis C (HCV), one for genotype 3 and the other for genotype 4. The first medication is […]


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