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Study Suggests Racial and Ethnic Disparities in Hemophilia and ITI
Industry News & Research, Living with a Bleeding Disorder
Findings of a new study uncovered specific disparities in hemophilia care by focusing on the use of immune tolerance therapy (ITI) in people with hemophilia A and an inhibitor. Learn…
Camp Klotty Pine Registration Opens Soon!
GLHF News
…keep our campers safe, connected and having fun in a new format. We will kick camp using a virtual format the night of August 9th including a virtual opening campfire…
FDA Releases Guidance Documents for Gene Therapies
Industry News & Research
…(IND) applications coming to the agency – the FDA reports receiving 900 IND applications for ongoing gene therapy clinical trials in many therapeutic areas. “The growth of innovative research and…
New CME-Accredited Activity on Evaluating Patients with Suspected VWD
Industry News & Research
Register today for a new CME-accredited educational activity on “Recognizing and Remediating von Willebrand Disease – A Case Study in Collaborative Care,” provided by Haymarket Medical Education and the National Hemophilia Foundation. Supported…
COVID-19 Vaccines and Bleeding Disorders: FAQs and Guidance
COVID-19, Health and Well Being, Living with a Bleeding Disorder
COVID-19 Vaccines and Bleeding Disorders: FAQs These FAQs were created in anticipation of questions or concerns individuals with bleeding disorders may have about the new COVID-19 vaccines. Read more. www.hemophilia.org…
Health and Wellness Update from Dr. Leonard Valentino About Vaccines, Hesitancy and Understanding VITT
COVID-19, Health and Well Being
…initiative that NHF (https://www.hemophilia.org/research) along with the American Thrombosis and Hemostasis Network (ATHN, www.athn.org) is undertaking to address the important gaps in care that our community has identified. It’s true…
New Financial and Patient Support Services for People Living With Hemophilia
Industry News & Research
…the comprehensive support needed to best manage their disease. “At PAN, we are committed to not only helping patients overcome financial barriers to care, but also to connecting patients to…
Video Celebrates Nurses in Bleeding Disorders Care
GLHF News
…Bleeding Disorders Conference, watch the video below! https://www.youtube.com/watch?v=zq6zaclntzE&t=9s Thank you to the NBDF’s Nursing Working Group for helping to coordinate and collect the interviews that make up this video. Source: National Bleeding…
WTAE-TV (PA) Feature: Copay Accumulators – Who Really Benefits?
Industry News & Research, Living with a Bleeding Disorder
In an NBDF interview, Bill Robie, Senior Director of Government Relations, highlighted the ongoing challenges of living with von Willebrand disease. https://www.youtube.com/embed/WAHZukHBTus In a recent interview with the National Bleeding…
Could a Cure for Hemophilia Be Personalized?
Industry News & Research, Living with a Bleeding Disorder
…done, but there are a lot of terrific ideas and promising technologies.” November 2019 Source: LA Kelley Communications, Inc. www.kelleycom.com. Reprinted with permission. *Biomarin could not be reached for comment….
Milwaukee Area Physicians Appeal to the Community
COVID-19, Industry News & Research
…part in preventing the spread of COVID-19 and its impact on families, friends and our community. Click on the two minute below video to find out what they’re asking. https://www.youtube.com/watch?v=TBoH5O8wlvM&feature=youtu.be…
Copay Accumulator Adjustments: What Are They and How They Can Affect You
Advocacy & Legislation
…more people depend on copay assistance to afford their life-saving specialty medications. This video demonstrates how Copay Accumulator Adjustments affect patients requiring specialty medications with no generic alternatives. https://www.youtube.com/watch?v=7ExMnOJs-h8…
Let Your Voice Be Heard! Take the National HTC Patient Satisfaction Survey Today!
GLHF News, Health and Well Being, Living with a Bleeding Disorder
…in 2020, they want to hear from you! You can take the survey online at www.htcsurvey.com. The survey closes on June 30, 2021. This survey is a follow-up to the…
Bombardier Climbs the Seven Summits — Proving That with Support and Guidance, We Can All Achieve our Dreams
GLHF News
…that educates, supports and advocates for the bleeding disorders community of Wisconsin, we were so fortunate to have Chris personally come here to show his film and share his experiences,”…
Children’s Storybooks Provide Insight and Education for Kids with Hemophilia
Living with a Bleeding Disorder
…boy tries different pain control techniques while imagining he is different until he conquers his fear. (Ages 3-6). To learn more about these books, go to kelleycom.com or Email: info@kelleycom.com.…
Takeda Raises Issue with some BAXJECT® II reconstitution devices for use in conjunction with RECOMBINATE and RIXUBIS® in the U.S.
Industry News & Research
…1-877-TAKEDA-7 (1-877- 825-3327). You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch or call 1-800-FDA-1088. Source: National Bleeding Disorders Foundation (NBDF, formerly NHF)…
Learn About Clinical Issues in Women with Bleeding Disorders
Industry News & Research, Women with Bleeding Disorders
…bleeding. They were first presented live/virtual educational activities in the Collaborative Learning Exchange (CLE) program. Featured topics include VWD Diagnostic Testing Challenges for WGPPM; Provider and Patient Communications for Shared Decision-Making when…
What You Need to Know About Mild Hemophilia
Industry News & Research
…or harsh.” But when it comes to mild hemophilia, experts say this classification of the disease is mild in name only. “Just because your hemophilia is classified as mild, that…
COVID-19 Update
COVID-19, GLHF News
In response to the COVID-19 pandemic, GLHF has produced two new vehicles for information: a COVID-19 specific category in the News section of our website, along with weekly e-newsletter updates:…
Hepatocellular Cancer Screening and Gene Therapy Preparedness the Focus of New Recommendations
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
NBDF’s Medical and Scientific Advisory Council issued two new documents making recommendations on criteria for hepatocellular cancer (HCC) screening and helping hemophilia treatment centers prepare for commercial gene therapy Read…
Medicaid and CHIP Continuous Enrollment Unwinding
Advocacy & Legislation, Industry News & Research
…Health Insurance Marketplace®, and get help paying for it. Here are some things you can do to prepare: -Make sure your address is up to date -Make sure your state…
The Spirit of Giving: Camp Klotty Pine’s Leader-in-Training Program
GLHF News
When you have been coming to Camp every summer since you were eight years old, there comes a point when you have mastered the activities, sang all the songs, made…
Advocating for Your Care in the Emergency Room
Health and Well Being, Living with a Bleeding Disorder
by: Lena Volland, PT, Ph.D.(c). In this video, Lena Volland, PT, DPT, Director of Education at the NHF, discusses how to prepare in advance for a possible emergency, and how…
Be an Informed Voter! Register to Vote Today!
Advocacy & Legislation, Industry News & Research
There’s still time to PLAN YOUR VOTE!. If you’re a new voter, or not registered yet, use your voice and prepare yourself to VOTE this November. In-Person Early Voting in…