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Volunteer Spotlight: No Brighter Star

April 24, 2017

Each year, the HFA staff recognizes the national spirit and remarkable volunteerism for HFA with the #bleedingdisorders community. As #VolunteerAppreciationMonth comes to a close this week, we will be recognizing award winners from #HFA2017. Today, we remember Star Tyree, a long-time HFA supporter, volunteer, and friend.   Starlyn (Star) Tyree was a former Executive Director […]

Factor I Deficiency: A Voice for a Rare Community

April 8, 2016

My name is Rick Kelly, and my wife, Josie, I are the proud parents of Forrest. Forrest has a rare bleeding disorder called afibrinogenemia, or Factor I deficiency. This is the story of afibrinogenemia in three anecdotes that explain what afibrinogenemia is, the current state of treatment and its outlook for the future. In sharing […]

Remembering Ryan White 26 Years Later

April 7, 2016

Ryan White died at the age of 18 on April 8, 1990. During the 1980s, Ryan bravely became a national spokesperson and symbol of hope for the hemophilia and HIV/AIDS community after being expelled from middle school due to community fears that the virus would spread to other children. Learn more about Ryan’s legacy by clicking […]

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’t know […]

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 here. A single injection. That’s 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 […]

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 […]

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 […]

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 […]

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 […]

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® 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  Coagadex, Coagulation Factor X (Human), for hereditary Factor X (10) deficiency. Until […]

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. 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 […]

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 […]

FDA Approves Fast Track Designation for New Hemophilia B Treatment

September 18, 2015

Note: This is an edited form of a press release from Dimension Therapeutics, Inc. To read the original release in its entirety, click here. Dimension Therapeutics, Inc. announced on Thursday, September 17 that the U.S. Food and Drug Administration (FDA) has granted Fast Track designation for the company’s lead product candidate, DTX101, for the treatment of […]

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?  I want them to know how best to respond to any incidents without treating her like a Faberge egg. Signed, Off to School—Now 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 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 […]

vWD Recombinant Clotting Protein Shown To Be Effective

August 3, 2015

Note: This is an edited version of a release originally published in Blood, the Journal of the American Society of Hematology (ASH).  On August 3, 2015, the journal Blood published 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

“I don’t have a bleeding disorder,” 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). “I know you don’t have a bleeding disorder, but they are allowing siblings to attend.  […]

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 […]

HFA Interns Tour Maryland Plasma Center

July 24, 2015

Earlier this summer, we introduced you to Adam and Matthew, our summer Policy Interns. These two have been busy all over DC, attending Congressional hearings, Executive briefings, and much more. Last week, Matthew and Adam had the opportunity to tour Grifol’s plasma collection center in Frederick, MD. Centers like this collected plasma from donors, returning the […]

A Gene-Sequence Swap Using CRISPR To Cure Hemophilia

July 24, 2015

Note: The following is taken from a press release from the Korean-based Institute for Basic Science. To read the original release, click here. Sufferers of hemophilia live in a perpetual state of stress and anxiety: their joints wear down prematurely and they have bleeding episodes that feel like they will never end. Their bodies lack […]

FDA Grants Orphan Status for New Inhibitor Treatment

July 2, 2015

Below is from a press release Apitope sent out on June 9, 2015. To read it in its entirety, click here. Apitope, the drug discovery and development company focused on disease-modifying treatments that reinstate immune tolerance, announced today that pre-clinical product candidate ATX-F8-117 has been granted Orphan Drug Status by the US Food and Drug […]

My Dad: As Seen By A Hemo Mom & Daughter

June 21, 2015

    I wish I could run on the beach with my Dad. This thought went through my mind as I watched a father and daughter on the beach a few weeks ago.  As I watched the dad and daughter run into the distance, I started to feel sad. I never saw my dad run.  […]

Cycling 4,000 Miles for Hemophilia Awareness

June 19, 2015

Note: This story originally appeared on PRWeb. Barry Haarde is a participant in HFA’s annual Gears for Good ride from West Virginia to Washington, DC. Cyclist Barry Haarde is on a mission to raise awareness about hemophilia and encourage individuals to support needy hemophilic children through Save One Life, which supports more than 1,200 individuals with […]

How a Second Grader with Hemophilia Copes with Pain

June 9, 2015

Kelly and Brian of Oregon never expected their son, Bubba, to have severe hemophilia A, and they certainly never expected Bubba to experience the complications of an inhibitor and chronic pain in his childhood. Kelly shared her family’s experiences with HFA with hopes that other families can learn from their experiences. How did you find […]

2015 Advocacy and Government Affairs Interns

June 4, 2015

Earlier this year, we opened applications for a ten week advocacy & government relations internship* for this summer. We are excited to introduce you to the two candidates that we selected! Adam and Matthew are part of the bleeding disorders community and have been chosen because of their leadership qualities and interest in the field of […]

Dear Addy: Fundraising

June 1, 2015

Dear Addy, I really want to be able to help raise awareness of, and funds for the bleeding disorders community. I don’t know what I could do to get people to donate. Please help me! Signed, HemoProud Dear Proud, The best way to raise bleeding disorders awareness, and in turn raise funds to support HFA […]

My Journey with Pain

May 19, 2015

Pain is a very personal experience. Everyone has their own definitions, feelings, and memories associated with pain. Some pain is greater than others. Some pain paralyzes you, and some pain motivates you. How someone chooses to define and cope with pain is molded by his/her experiences throughout a lifetime. Below is a story of one […]

FDA Making Progress With Blood Safety Monitoring System

May 15, 2015

Last December, Food and Drug Administration (FDA) Commissioner Margaret A. Hamburg  set forth a recommendation to change the current blood donation policy for men who have sex with men (MSM). The old policy, set forth in the height of the AIDS crisis of the 1980s, barred men who have had sex with men since 1977 from donating blood. […]


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