Donate

FDA Approves First 14-Day Hemophilia B Treatment

March 5, 2016

Note: The following is an edited form of a press release from the FDA . The original form of the release can be read聽here. The U.S. Food and Drug Administration approved on Friday, March 4, Idelvion, Coagulation Factor IX (Recombinant), Albumin Fusion Protein, for use in children and adults with Hemophilia B. Idelvion is the […]

FDA Gives Orphan Drug Designation for Hemophilia A Gene Therapy

March 1, 2016

Note: The below is an edited version of a press release by BioMarin Pharmaceutical Inc. The original release can be read in its entirety here. BioMarin Pharmaceutical Inc. announced on Tuesday, March 1, that BMN 270, an investigational gene therapy for the treatment of patients with hemophilia A, has been granted orphan drug designation by […]

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 […]

Infusing Love: Unplugged

February 17, 2016

For those of us with children who have their own cell phones, how many times a day do you say, 鈥淕et off the phone!鈥 or 鈥淧ut the phone down!鈥? But I challenge you to think about yourself: How many things are you doing right now? Other than reading this blog 鈥 one, two, three more […]

Infusing Love: Second Guessing

February 10, 2016

I deal with mommy guilt every time Jackson has a bleed. When my son is having a bleed, he tells me before there is any visible signs off swelling. I never doubt when he tells me鈥e knows his body. Two weeks ago, we got a dreaded call from the school health aide letting us know […]

Dear Addy: Pharmacy Choice

February 5, 2016

Dear Addy, Last year, my friend with hemophilia started working for a specialty pharmacy. Since then, he鈥檚 been pressuring me to switch from my current pharmacy to his. Initially, he was polite and nice, taking me to lunch and then dinner to ask for my business. Each time, I told him I am content with […]

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 […]

Infusing Love: For the Love of Basketball

February 3, 2016

It is important for individuals with a bleeding disorder to find a form of physical activity that they enjoy. When muscles are used during exercise it helps to keep them flexible and strong.聽 Physical activity also helps individuals to maintain a healthy weight, which keeps less stress off the joints, and has even proven to […]

New Gene Therapy Treatment Proves Effective In Dogs

February 2, 2016

Note: The following is an edited form of a press release from the University of North Carolina School of Medicine. The original release can be read聽here. A single injection. That鈥檚 all someone with a factor VII deficiency would need for a life-long cure, thanks to a new gene therapy treatment developed in a collaboration of […]

FDA鈥檚 Completed Revision of MSM Donor Deferral Policy

January 28, 2016

Background The Food & Drug Administration (FDA) is responsible for recommending policies and making rules regarding the donation of blood and blood products. During the 1980s, when it became clear that transmission of Acquired Immune Deficiency Syndrome (AIDS) happened through blood, the FDA began recommending multiple policies that would decrease the risk of transmission of […]

Infusing Love: A Letter to Hemophilia

January 27, 2016

Dear Hemophilia, There was a time when you devastated me. You destroyed my little boy鈥檚 knee and ankle, causing tremendous pain and forcing him to undergo several port surgeries. He missed weeks of school. Oh, and let’s not forget the wheelchair you put him in for over a year. That was torture, taking away his […]

Opioids, Addiction, & Bleeding Disorders

January 25, 2016

It is recognized in the bleeding disorders community that opioid聽medications can be a helpful addition to the treatment plan聽for patients experiencing refractory acute pain, as well as聽for those with long-standing chronic pain 聽resulting from joint聽disease. Opioids as a class of drugs are used for many types of聽pain. According to the Centers for Disease Control and […]

Infusing Love: Normal is as Normal Does

January 20, 2016

Sometimes, as I wander around whatever hospital we鈥檙e in, I wonder what the difference in normal is between us and them: those living with a chronic condition and the people that do not. As they were wheeling Max into the operating room for yet another surgery, I wondered when this became our normal. Max and […]

Dear Addy: Why Are Medical Alert IDs Important?

January 15, 2016

Dear Addy, Several parents that I鈥檝e met at the HTC have recommended I should get my daughter a medical ID bracelet. Why is this so important? Are there resources available to help me get her one? Signed Inquiring About IDs Dear Inquiring, For patients with serious medical conditions like a bleeding disorder, it鈥檚 important that […]

Infusing Love: Wrapping Up The Imperfect

December 23, 2015

Christmas is just a few days away. If any of you are like me, you are wondering where the year has gone. At work, clients want all their matters wrapped up and at home I need all my presents wrapped up!! You鈥檝e probably heard the Walgreens commercial 鈥 on the corner of happy and healthy. […]

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 […]

Dear Addy: Do I Have a Bleeding Disorder?

December 21, 2015

Dear Addy, I鈥檓 a woman who bruises easily and has a heavy menstrual cycle. Does this mean I have a bleeding disorder? Signed, Possible Female Bleeder聽 Dear Possible Bleeder, This is a great question and one that HFA is hearing more frequently from women. Bleeding disorders can be dangerous if they are not treated. Women […]

Infusing Love: A Sweet Escape

December 16, 2015

Life will almost always be unpredictable; it鈥檚 just part of the experience of being human. You can do your best to try and control how things will turn out, but even with precise planning and micromanaging, we all have to face disappointments and adjust our sails along the way. Accepting this and gaining new perspectives […]

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 […]

Infusing Love: Volunteers Make the World Go Round

December 9, 2015

With the holidays approaching and this year coming to a close, I have found myself reflecting on the little things I am most thankful for in this community. Micah and I are truly blessed and thankful to have the people and support we have found — all because he has hemophilia. Too often we get […]

Infusing Love: A World of Thanks

November 25, 2015

I was at the craft store the other day looking for Thanksgiving dessert plates and napkins; instead I found Christmas decorations from corner to corner. I asked a sales associate where I could find the fall or Thanksgiving related d茅cor. To my disappointment it had all been removed the day after Halloween. My quick retort […]

Open Enrollment For 2016 Is Here

November 18, 2015

Though Thanksgiving has yet to arrive, it is time to start making your list and checking it twice. No, not that list; the list of the things you need to make sure your health insurance plan covers when your open enrollment period starts. An open enrollment period is the time when individuals can enroll themselves […]

Infusing Love: Losing Myself

November 4, 2015

  I love being a mom. Nothing makes me happier than cooking a great meal for my family, making soup to feed a cold, and even washing and folding their clothes.聽I am blessed to still pack lunches for one of my kids, while I watch my oldest one pack his own for his day at […]

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 […]

Infusing Love: Hemo Hacks

October 29, 2015

*Note: 鈥淚nfusing Love: A Mom鈥檚 View,鈥 is a blog collection of personal opinions and a representation of individuals experiences. While extensive efforts are made to ensure accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also not intended to be construed as medical advice or […]

Infusing Love: A Long Lasting Opportunity

October 22, 2015

In our family, we are open to participating in research, thinking, 鈥渋f it can help our kids or help a future family or patient then we are all for it.鈥 So when the opportunity arose to be enrolled in a trail to test long lasting factor, we jumped on it. We did our homework 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 […]

Infusing Love: He鈥檒l Do It When He鈥檚 Ready

October 14, 2015

Nick and his classmates were talking about different health disorders in his health class, and one of his friends disclosed to Nick that he had ADD. Nick replied, 鈥淲ell, I have hemophilia.鈥 That was the first and only time Nick divulged his hemophilia diagnosis to a friend. I have to admit that this bothers me, […]

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 […]


Sign up for E-mails, Dateline Magazine, and other ways to stay connected.