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A Closer Look at Hemophilia Management: Improving Outcomes with Personalized Care Now Available On-Demand

June 24, 2020

A Closer Look at Hemophilia Management: Improving Outcomes with Personalized Care is聽now available On-Demand.聽The聽RareDisease Live video education session was presented by National Organization for Rare Disorders, Inc. (NORD) in partnership with Hemophilia Federation of America and the National Hemophilia Foundation in June 2020. Hemophilia A, also called factor VIII (FVIII) deficiency or classic hemophilia, is […]

How FDA is Putting the Patient Voice at the Forefront of Gene Therapy Clinical Trials for Hemophilia

February 12, 2020

By Najat Bouchkouj, M.D., Bindu George, M.D., and Karen Jackler, MPH A person with hemophilia can experience aspects of their disease that even the most qualified doctors and scientists can鈥檛 fully appreciate. This is why the Center for Biologics Evaluation and Research at the Food and Drug Administration is working to hear and understand the […]

Patients’ Genetic Privacy Threatened by H.R. 1313

March 21, 2017

Congress is currently considering legislation that would undermine patient privacy and workplace non-discrimination protections for individuals and families affected by genetic conditions. This legislation, the Preserving Employee Wellness Programs Act (H.R.1313) was approved by a House committee earlier this month. Under existing law, an employer can run a 鈥渧oluntary鈥 workplace wellness program 鈥 and can […]

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 […]

HFA Partnering With NORD For Rare Disease Day and Hemophilia Awareness Month

February 12, 2015

In a couple of weeks, the bleeding disorders community will be recognizing聽Rare Disease Day聽on February 28,聽Hemophilia Awareness Month聽during the entire month of March, and聽World Hemophilia Day聽on April 17. These important dates were created to help raise awareness about rare conditions like hemophilia and other bleeding disorders. This year, we are thrilled to partner with the聽National […]

Rare Disease Day: Feb. 28th 2010

January 14, 2010

Celebrate Rare Disease Day on February 28th 2010!聽 Write your governor to ask for the last day in February to be proclaimed Rare Disease Day in your state.聽聽 Thank you to NORD, the National Organization for Rare Disorders for organizing this event!


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