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NBDF Unveils THRIVE Campaign: Empowering Individuals with Bleeding Disorders through 6 Essential Steps
Industry News & Research
…announce the launch of the THRIVE campaign, a comprehensive initiative designed to raise awareness and educate the community about six vital steps to living healthily with a bleeding disorder. This…
Hemophilia History: The Romanov Family – Insights From Historian Dr. Helen Rappaport
Industry News & Research, Living with a Bleeding Disorder
…at various times and how hemophilia impacted her family. You can find out information about all my books and events at helenrappaport.com. I am on Twitter as Helen Rappaport and…
Pfizer Reports First Quarter 2002 Update of Gene Therapy Trial
Industry News & Research
…asset that they remain committed to the hemophilia community and anticipate resuming dosing in the AFFINE trial in the third quarter of 2022. Source: Hemophilia Federation of America, May 2022…
A Guide to Living with von Willebrand Disease is Back!
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
The world’s first book on the world’s most commonly inherited bleeding disorder, by Laureen A. Kelley and Paul Clement, is back in print. Topics include learning to cope with VWD,…
Navigating Career Decisions When You Have a Bleeding Disorder
Health and Well Being, Living with a Bleeding Disorder
…safe and healthy at work. Such requests are referred to as accommodations under the Americans with Disabilities Act, and as long as they are reasonable — they allow a person…
Navigating the financial challenges of bleeding disorders
Health and Well Being, Living with a Bleeding Disorder
…the community relied on HFA’s programs, so following are five alternate avenues for finding aid. Patient assistance programs Many pharmaceutical companies offer patient assistance programs to provide financial help to people who…
From the CDC: Mental Health and Coping During COVID-19 – Tools and Resources
COVID-19, Health and Well Being
…cause strong emotions in adults and children. Public health actions, such as social distancing, can make people feel isolated and lonely and can increase stress and anxiety. However, these actions…
COVID-19 Vaccines and Bleeding Disorders: FAQs and Guidance
COVID-19, Health and Well Being, Living with a Bleeding Disorder
…collaboration with patient organizations, take action to inform people with bleeding disorders about the COVID-19 vaccines and contribute to an effective vaccination program. Read more www.hemophilia.org Source: National Hemophilia Foundation…
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…
Review Your Health Coverage: Recent Federal Law Lowers Costs, Opens Up New Options
Advocacy & Legislation, Industry News & Research
…enroll in Marketplace coverage. All federal Marketplaces are currently open for a special enrollment period (SEP) until August 15th. Similarly, all state-based Marketplaces are also open (though they may have…
New Financial and Patient Support Services for People Living With Hemophilia
Industry News & Research
The Patient Access Network (PAN) Foundation and the National Hemophilia Foundation (NHF) announced they are launching a new alliance to offer a broad range of support for people living with…
Volunteer with GLHF in 2023!
GLHF News
…Consider volunteering at a program or event in 2023! Volunteer Opportunities: Milwaukee’s Best Bloody February 26, 2023 – Italian Community Center Must be 21+ to volunteer Madison’s Best Bloody April…
Gene Therapy in Hemophilia: Come Find Out What All the Buzz is About
GLHF News, Industry News & Research
…to ask your doctor, and hear one patient’s experience For live program dates and times, visit our Events Calendar: Dinner is provided at all programs. Please contact Kailee Frederick at…
GLHF Awarded Continued Cooperative Agreement from HRSA for the Northern States Region
GLHF News, Industry News & Research
GLHF is honored to announce that we have secured another five-year cooperative agreement with the Health Resources Services Administration (HRSA) to continue our work and role as the Regional Core…
The Wait is Over – Milwaukee’s Best Bloody is This Sunday! Get Your Tickets Today!
GLHF News
…us as Milwaukee area bars and restaurants give back to the community in a fun, unique way, while showcasing their signature mix and garnish. Join us as we enjoy signature…
Active Dad Doesn’t Let Hemophilia Slow Him Down
Living with a Bleeding Disorder
…me,” said David. “I can accomplish anything as long as I take good care of myself.” Finding Support “The Hemophilia Walk gives us a voice and promotes a healthy lifestyle….
Hemophilia Treatment Centers
…helping them live longer and be more independent and productive with a comprehensive, cost-effective, long term approach. Learn more about the Regional Hemophilia Network. Find an HTC near you on…
A Brief History of Gene Therapy: What It Means and Its Promise for the Hemophilia B Community
Industry News & Research, Living with a Bleeding Disorder
…undermine our health. Gene therapy is an innovative, transformative treatment approach that aims to address these underlying genetic mutations to treat or cure a condition. The first attempts at gene…
FDA Accepts BioMarin’s Biologics License Application (BLA) for Valoctocogene Roxaparvovec AAV Gene Therapy for Adults with Severe Hemophilia A
Industry News & Research
…A. The Prescription Drug User Fee Act (PDUFA) target action date is March 31, 2023. At this time, the FDA has not communicated any plans to hold an advisory committee meeting. …
NHF Assumes Leadership of the American Plasma Users Coalition
Advocacy & Legislation, Industry News & Research
…lives while using plasma-derived medicines. To learn more about the APLUS Coalition, visit https://www.plasmahero.org/news/american-plasma-users-coalition. Those with questions about NHF’s new role within APLUS are encouraged to contact communications@hemophilia.org. Source: National Hemophilia Foundation…
Video Celebrates Nurses in Bleeding Disorders Care
GLHF News
…reflect on the early years of hemophilia management, the evolution of treatment, and the impact of summer camps to empower children and teens. The nurses also talk about representation and…
WTAE-TV (PA) Feature: Copay Accumulators – Who Really Benefits?
Industry News & Research, Living with a Bleeding Disorder
…This rare disorder affects approximately 3 million Americans and necessitates regular, costly treatments to manage. Maria Shoemaker has been managing Von Willebrand disease with regular infusions of a clotting factor…
Could a Cure for Hemophilia Be Personalized?
Industry News & Research, Living with a Bleeding Disorder
…There’s still a lot of work to be done, but there are a lot of terrific ideas and promising technologies.” November 2019 Source: LA Kelley Communications, Inc. www.kelleycom.com. Reprinted with…
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…