News
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Camp Klotty Pine Registration Opens Soon!
GLHF News
Join us, August 9 – 13, 2021, as we head back to Camp Klotty Pine for a very special hybrid version of…
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NHF’s Bleeding Disorders Conference, August 25 – 28, 2021!
Industry News & Research
NHF’s Annual Bleeding Disorders Conference (BDC) is their signature event and highlights their commitment to education. Leading community members and experts on…
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A Message from NHF President and CEO Leonard A. Valentino, M.D. Regarding the Fight Against Racism
Health and Well Being, Industry News & Research
The verdict is an important and significant step forward in the fight against racism, and the violence that it brings to our…
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WFH: Specific Risks of COVID-19 to the Bleeding Disorders Community
COVID-19, Industry News & Research
The COVID-19 Task Force of the World Federation of Hemophilia (WFH) has released a statement on risks of acquiring COVID-19 disease and…
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BioMarin Presents Positive Safety and Efficacy Data for their Hemophilia A Gene Therapy
Industry News & Research
These data were presented by BioMarin at the American Society of Gene & Cell Therapy Virtual Meeting, which was held May 11-14,…
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Gene Therapy Trial Data Suggests Efficacy in the Presence of Antibodies
Industry News & Research
The recent American Society of Gene & Cell Therapy (ASGCT) Virtual Meeting featured updates from the phase III HOPE-B clinical trial of…
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NHF Marks the 40th Anniversary of the HIV Epidemic
Industry News & Research, Living with a Bleeding Disorder
June 3, 2021 – Statement from Nathan Schaefer, Vice President of Public Policy, National Hemophilia Foundation This June marks a painful anniversary…
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June is Joint Health Month!
Health and Well Being, Living with a Bleeding Disorder
This June learn what your joints want, what they need, and how to help them keep you going. Read more. Source: National…
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NHF Compiles List of 2021 Scholarships! Apply Today!
Health and Well Being, Industry News & Research
Time for an important reminder – “Scholarship season” is now in full swing! NHF’s information service, HANDI, compiles an annual online list…
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National Patient & Caregiver Survey Shows that COVID-19 Has Exacerbated Treatment Affordability Challenges & Health Inequities for Vulnerable Americans
COVID-19
Many patients across the country – including those in vulnerable and underserved communities – are experiencing challenges in affording and accessing necessary…
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Video: Diagnostic Challenges and New VWD Guidelines
Industry News & Research, Living with a Bleeding Disorder
In this video, Robert Sidonio Jr., M.D., discusses the new von Willebrand Disease (VWD) Guidelines and the most significant changes that healthcare…
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NHF Celebrates Women’s Health Month with Series of Webinars Critical to Women and Bleeding Disorders
Health and Well Being, Industry News & Research
We are marking women’s health month with a series of webinars that focus on critical issues for women with bleeding disorders. Our…
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Health and Wellness Update from Dr. Leonard Valentino About Vaccines, Hesitancy and Understanding VITT
COVID-19, Health and Well Being
COVID-19 and the pandemic continue to dominate the news cycle for most Americans, although many of us would like to think about…
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Take the National HTC Patient Satisfaction Survey
Industry News & Research
This national survey is designed to assess patient demographics, their satisfaction with the HTC’s core treatment team, its services, and care processes….
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Study Looks at Neuraxial Anesthesia and Postpartum Complications in Hemophilia
Industry News & Research
Neuraxial anesthesia, a focus of this study, refers to the administration of local anesthetics and analgesia to targeted locations in the spinal…
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Gene Therapy Licensing Agreement Between uniQure and CSL Now in Effect
Industry News & Research
The commercialization and licensing agreement between the two companies went into effect on May 6th. May 7, 2021 uniQure recently announced that…
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New Chief Scientific Officer Joins NHF
Industry News & Research
Kevin Mills, PhD has joined the National Hemophilia Foundation as chief scientific officer. A graduate of University of Colorado Boulder, MIT, and…
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uniQure Announces End of Clinical Hold on Hemophilia B Gene Therapy Program
Industry News & Research
Late last year the FDA put a clinical hold on the program in response to a single trial participant who was diagnosed…
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How Caregivers Can Care for Themselves
Health and Well Being
by: Michael Hickey Caregivers devote themselves to the well-being of others, but to be their best they need to practice self-care. Being…
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A Groundbreaking Discovery for Hemophilia Research
Health and Well Being, Industry News & Research
Biochemist Gordon Vehar, PhD, vice president of external innovation at BioMarin Pharmaceutical Inc., has been at the forefront of a scientific revolution….
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Let Your Voice Be Heard! Take the National HTC Patient Satisfaction Survey Today!
GLHF News, Health and Well Being, Living with a Bleeding Disorder
Hemophilia Treatment Centers (HTCs) across the United States are participating in the 2021 National HTC Patient Satisfaction Survey! If you, or someone…
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We Miss Seeing You! Join us (Virtually) at our Upcoming Programs and Events!
GLHF News
We have been limited in our ability to meet face-to-face over the last year, but we want to continue to stay connected…
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Extended ACA Open Enrollment Period
COVID-19, Health and Well Being
You can enroll in health plans due to the COVID-19 emergency through August 15, or anytime if you have certain life changes…
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State of WI Declares April 17 World Hemophilia Day!
Advocacy & Legislation
Whereas; since its designation by the World Federation of Hemophilia in 1989, World Hemophilia Day has been celebrated on April 17 as…