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 […]

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 […]

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 […]

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’s 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’s Biologics License Application (BLA) for its novel investigational recombinant factor VIII single-chain (rVIII-SingleChain) for the treatment of hemophilia A. In the […]

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 […]

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 […]

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 […]

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