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Get Ready for the Hemocraft ™ Challenge! Loosely Based off of the Hit Video Game Minecraft, Hemocraft Teaches Kids the Importance of Staying Prepared and Sticking to a Treatment Plan!
Living with a Bleeding Disorder
…your own. In MINECRAFTTM, you search for items and then combine them to “craft” new ones. In HEMOCRAFTTM, your treatment team will teach you where to find items you’ll use…
A Message to the GLHF Community from our Executive Director
GLHF News
…fun in our social media spirit week are all decked out in your red today. Check out our Facebook page to learn about our exciting Multi-Media Art Contest and ideas…
Health and Wellness Update from NHF’s Dr. Leonard Valentino
COVID-19
…posted on the NHF website at www.hemophilia.org. If you have specific questions about the COVID-19 virus, please email them to communications@hemophilia.org and I will try to address them in the…
BioMarin Releases Trial Updates in Lead Up to WFH Virtual Summit
Industry News & Research
…the six participants in the small dose group remain free of spontaneous bleeds over the course of the last year. “It’s been a privilege to participate in this pioneering research…
Important: Action Needed Regarding Medicaid and Badgercare Eligibility
Advocacy & Legislation, Industry News & Research
As you may have heard, the Medicaid and CHIP (called Badgercare in Wisconsin) programs are re-starting eligibility reviews. Community members may receive letters, emails or other communications from these public…
The Importance of Telehealth
Health and Well Being, Living with a Bleeding Disorder
…you know, resources I know on our, you know, medical providers, websites, also our behavioral and mental health provider websites. Telehealth Resources They almost always have a telehealth tab, so…
NHF Assumes Leadership of the American Plasma Users Coalition
Advocacy & Legislation, Industry News & Research
…lives they are currently living now. To learn more about the plasma-using community, visit each member organization’s website to learn about each community and their work to help patients live…
uniQure Announces Updated Data from Phase 2B Dose Confirmation of AMT-061
Industry News & Research
…write uniQureHOPE0B@uniqure.com for more information. For more information: uniQure Announces Updated Clinical Data from Phase IIb Study of AMT-061 in Patients with Hemophilia B uniQure Announces First Patient Treated in…
Alex Borstein Brings Star Power to Raise Awareness of VWD
Industry News & Research
…website, ThinkVWD.com, features two PSA’s featuring Ms. Borstein that takes a closer look at how bleeding disorders affect women. There is also a downloadable booklet that will allow women and girls…
Pfizer/Sangamo Hemophilia A Gene Therapy Program on Clinical Hold
Industry News & Research
…About the AFFINE study The Phase 3 AFFINE (efficAcy and saFety Factor vIii geNe thErapy in hemophilia A patients; NCT04370054) study is an open-label, multicenter, single-arm study to evaluate the…
As Part of Medicaid “Unwinding,” Disenrollments Are Now Underway in about 40 States. Will You Lose Your Medicaid? Learn What You Can Do!
Health and Well Being, Industry News & Research
…adverse decision is upheld. KFF, the noted health policy research outfit, published an initial report on findings from a comprehensive study of consumer experiences with health insurance. KFF found, among other…
Summit Emphasizes Pharmacovigilance in the Inherited Bleeding Disorders Community
Industry News & Research
…be disparate, delayed, and even contradictory. The inherited bleeding disorder (IBD) community has seen its share of poor reporting and communication of safety incidents in recent years, which compelled the…
NHF, HFA and Hemophilia Alliance Continue Push for Information on Stimate Recall
Industry News & Research
…sent a joint letter to CSL Behring and Ferring Pharmaceuticals requesting answers to questions about the events that led up to the recall and the companies’ plans for accomplishing the…
CARES Act Funding Announcement and MCTS Mask Guidelines
COVID-19
…to provide free masks on buses (one per customer) to passengers who may not have one, while supplies last. For more information about MCTS’s response to COVID-19, please visit RideMCTS.com/Coronavirus….
State of Denial: Tips on How to Work with Your Insurance Provider When You are Denied Coverage for Services or Medications
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
…to write a letter to the insurance company. If the insurance company still says no, you can file an appeal. • If your insurance company doesn’t agree with the treatment…
Emergency Preparedness
Industry News & Research
The NHF is saddened by the loss of life and destruction of communities due to catastrophic fires in the west and a number of hurricanes in the Southeast. It is…
FDA Recommends Additional Data for BioMarin’s Investigational Gene Therapy
Gene Therapy, Industry News & Research, Living with a Bleeding Disorder
…To this end, the FDA recommends that the company actually complete the phase 3 study and submit two-year follow-up safety and efficacy data on all study participants. Full enrollment for…
Guilt in Mothers of Children with Hemophilia Focus of New Study
Health and Well Being, Living with a Bleeding Disorder
…also suggested some positive takeaways. “Community immersion was beneficial, as other mothers in the community served as a source of social and educational support. Most mothers did not report guilt,…
Study Results Encourage Discussion of Therapeutic Options for VWD Patients with Menorrhagia
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder, Women with Bleeding Disorders
A new study investigated therapeutic options for von Willebrand Disease patients to help mitigate the negative health impacts of heavy menstrual bleeding. Learn About the Study Source: National Bleeding Disorders…
Black Men with Hemophilia Have a Shorter Life Expectancy than White Men
Health and Well Being, Men with Bleeding Disorders
…and what’s still left to learn. How was the mortality study set up, and what did you find? For the mortality study, we used cause-of-death information from death certificate data…
Pfizer Announces New Data from Hemophilia A Gene Therapy Study
GLHF News
Pfizer has announced positive topline results from their phase 3 clinical study of giroctocogene fitelparvovec, the company’s investigational hemophilia A gene therapy. The clinical trial program, known as AFFINE, is evaluating…
Legislation Restricting Accumulators and Maximizers Have No Impact on Premiums, According to a Global Health Living Foundation Analysis
Advocacy & Legislation, Industry News & Research
…Health Insurance Premium Fluctuations Using raw data from the HIX compare + website (Robert Wood Johnson Foundation), which provides data for most health insurance policies available through the Affordable Care Act (ACA)…
Wisconsin All Copays Count Coalition Gains Momentum, Addresses Challenges of Copay Accumulator Adjustors
Advocacy & Legislation, GLHF News, Industry News & Research
…analysis and their free interactive tool. To learn more about Copay Accumulator Adjustors and PBMs, visit our website. Source: All Copays Count Coalition, Coalition of Wisconsin Aging and Health Groups…
Patient Receives First Hemophilia A Gene Therapy Outside a Clinical Trial
GLHF News
…clinical trial setting was recently given to a patient in California. The patient, an adult with severe hemophilia A, received a single infusion of Roctavian™ (BioMarin) at the Center for Comprehensive Care…