Donate

News & Perspectives

Future Bisomilars: Pros and Cons

January 20, 2016

Note: This story was originally published in the January 2016 issue of BioSupply Trends Quarterly. It can be read in its original format here. By Meredith Whitmore In this brave new world of medicines, more and more physicians are prescribing a biologic. Perhaps they have even witnessed a patient’s remarkable transformation thanks to biologics such […]

New Dietary Guidelines for Americans

January 15, 2016

Last week, the U.S. Departments of Health and Human Services and Agriculture released the 2015-2020 Dietary Guidelines for Americans. The Dietary Guidelines for Americans is 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 […]

Dear Addy: Why Are Medical Alert IDs Important?

January 15, 2016

Dear Addy, Several parents that I’ve 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’s important that […]

Infusing Love: Summiting Mount Worry

January 13, 2016

I was recently talking with someone about Chris’s Seven Summit Quest, and the woman I was talking to said something that I didn’t understand. She said she was glad we raised Chris to not be a victim of his hemophilia. I asked her what she meant by that. She said so often people use medical […]

Drugmaker Shire Wins Baxalta for $32 Billion After Six-Month Pursuit

January 11, 2016

Note: The following story was published by Reuters on Monday, January 11, 2016 . It can be found here. Drugmaker Shire Plc clinched its six-month pursuit of Baxalta International Inc on Monday with an agreed $32 billion cash and stock offer, catapulting it to a leading position in treating rare diseases. The London-listed group, which first […]

Dimension Therapeutics Announces Initiation of Phase 1/2 Study For Hemophilia B Treatment

January 7, 2016

Note: The below is an edited press release from Dimension Therapeutics, Inc. The original release can be read here. Dimension Therapeutics, Inc. announced on January 7 the initiation of a phase 1/2 study of DTX101, the company’s lead therapeutic candidate, for the treatment of patients with hemophilia B. DTX101 is designed to deliver stable expression […]

uniQure Announces Preliminary Results from Hemophilia B Gene Therapy Trial

January 7, 2016

Note: the following is the  edited form of a  press releaseoriginally published by uniQure. The full release can be read here.  On Thursday, January 7, 2016, uniQure N.V. announced preliminary topline results from the low-dose cohort of an ongoing Phase I/II clinical trial being conducted in adult hemophilia B patients treated with uniQure’s novel AAV5/FIX […]

Infusing Love: Timeline of a January Bleed

January 6, 2016

Thomas has had his inhibitor for more than a decade, causing bleeds to be an unfortunate, but relatively routine, occurrence. We’re used to holiday bleeds, birthday bleeds, and random “where did that come from” bleeds. Be it crass or an obvious statement, bleeding happens, and we push forward. Through these tough times, we try to […]

Octapharma Announces US Availability of NUWIQ

January 4, 2016

 Note: The following is an edited press release from Octapharma USA. The original release can be read in its entirety here. Octapharma USA announced on Monday, January 4, 2016 that NUWIQ®, Antihemophilic Factor (Recombinant), is now commercially available. NUWIQ® is indicated for the treatment and control of bleeding, perioperative (surgical) management, and routine prophylaxis to reduce […]

Infusing Love: Realistic Expectations

December 31, 2015

There is nothing I love more than sitting around the Christmas tree with friends and family, sipping hot cocoa, singing holiday carols, and wearing a warm knit sweater with a reindeer on it. Ok, I admit it. I have never done any of those things, at least not all at the same time. I stole […]

European Commission Grants $6M to Develop New Hemophilia A Treatment

December 29, 2015

Note: The following is an edited press release from Sernova Corp. The original release can be read in its entirety here. Sernova Corp., a clinical stage regenerative medicine company, announced on Monday, December 21, 2015, that the European Commission’s Horizon 2020 program has awarded a Euro 5.6M ($6.1M USD) grant to a consortium consisting of […]

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’ve probably heard the Walgreens commercial – 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.  While this is true for the general population, it is especially important for individuals with hemophilia or other bleeding disorders.  We understand the importance that activity and a healthy diet play in maintaining an ideal weight and decreasing the number of bleeding episodes […]

Dear Addy: Do I Have a Bleeding Disorder?

December 21, 2015

Dear Addy, I’m a woman who bruises easily and has a heavy menstrual cycle. Does this mean I have a bleeding disorder? Signed, Possible Female Bleeder  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 […]

Health Plans’ Coverage Of Some Drugs Can Be A Source Of Consumer Confusion

December 21, 2015

Note: The following story was originally published by Kaiser Health News. By Julie Appleby Patients getting chemotherapy or other complex medications may have a sudden panic when shopping for health insurance: Their drugs often don’t appear to be covered. “People think, ‘Jeez, what do I do now?’” said Anna Howard, policy principal at the American […]

Infusing Love: A Sweet Escape

December 16, 2015

Life will almost always be unpredictable; it’s 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 […]

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

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

Update #2: SIPPET Study

December 10, 2015

This past weekend, the American Society of Hematology (ASH), a worldwide organization of 15,000+ medical and scientific experts on blood diseases, held their 57th Annual Meeting to discuss new treatments and research methods. During this meeting, a group of doctors from around the globe presented the findings of the Survey of Inhibitors in Plasma-Product Exposed Toddlers (SIPPET). […]

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 […]

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 […]

Phase I Study Results for Once-Monthly Subcutaneous Hemophilia Treatment

December 8, 2015

Note: The following is an edited press release from Alnylam. The original release can be read in its entirety here. Alnylam Pharmaceuticals, Inc. announced on December 7, 2015 positive results from its ongoing Phase 1 clinical study with fitusiran (fi-TOO-si-ran), the recommended International Nonproprietary Name (INN) for ALN-AT3. Fitusiran is an investigational RNAi therapeutic targeting […]

New Data Released on Long-Acting Hemophilia B Treatment

December 8, 2015

Note: The following is the edited version of a press release issued by CSL Behring. The original release can be found here. On December 7, 2015, CSL Behring presented data from its Phase III PROLONG-9FP clinical program evaluating the efficacy and long-term safety of its investigational long-acting fusion protein linking recombinant coagulation factor IX with recombinant […]

Pain and Mobility Are Major Problems for Patients with Hemophilia

December 8, 2015

Note: The following originally appeared on MDMagazine.com. New research further supports the understanding that patients with hemophilia suffer from pain and mobility issues, and it went on to uncover which joints are most greatly affected by the condition. Christine Kempton, MD, MSc, from Emory University in Georgia, and colleagues used multiple strategies to find how […]

New Patient Advocacy Coalition Leads the ‘Next Generation of Health Care Reform’

December 3, 2015

HFA recently became a charter member of Partners for Better Care (PBC), a nonpartisan coalition of patients and patient groups that seeks to improve access to quality medical care. The following is a press release from PBC about this partnership. Patient advocacy groups announced on Thursday, December 3, the launch of Partners for Better Care (PBC), a nonpartisan coalition beginning with over 10 […]

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 décor. To my disappointment it had all been removed the day after Halloween. My quick retort […]

Dear Addy: Inhibitors

November 23, 2015

Dear Addy, I’m taking my son in for his annual visit, and I saw that MASAC issued a statement about inhibitors. Should I have him checked for one? Signed, Learning All I Can Dear Learning, Inhibitors are antibodies that the immune system develops in response to a clotting factor product used to treat a person […]

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: Put Mom First!

November 18, 2015

I have a confession: I am a better talker than doer! Last November I wrote about self-care: “Self-care should not only be what we teach our children with a bleeding disorder.  We have to practice self-care for ourselves.  Our children learn more from watching us anyway.  If they see us taking the time to care […]

Listening To The Needs Of Women

November 17, 2015

“Throughout the CHOICE Project we heard from numerous women about their lack of access to the diagnosis and care they need as patients with bleeding disorders. Many women explained that doctors told them women can’t have hemophilia, or a bleeding disorder, and otherwise how providers were dismissive of their symptoms and pain.” — Wendy Owens, […]


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