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Telehealth for the Bleeding Disorders Community

Health and Well Being, Industry News & Research, Living with a Bleeding Disorder

…a missed annual exam or streamline checkups for people in the blood and bleeding disorders community. And use among the bleeding disorders community has been higher than national averages: More than a third…

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Advocacy Groups Voice Concerns Over Payer Matrix’s Self-Identification as Patient Advocacy Company

Advocacy & Legislation, Industry News & Research

Advocacy groups representing various disease communities voice concerns over Payer Matrix’s classification as a ‘Patient Advocacy Company.’ Read about their viewpoints and clarifications, as well as the groups’ letter to…

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COVID-19 Updates: Testing Locations, Handling COVID-19 Misinformation and Free Flu Shots!

COVID-19

…testing sites is free for anyone, regardless of symptoms. No appointment is needed. There are many testing location options throughout Milwaukee County. More information on locations and shuttles is available…

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Raising Money and Awareness

…to raise dollars and awareness for the bleeding disorders community. As a statewide organization Great Lakes Hemophilia Foundation (GLHF) is excited to come together at the Milwaukee County Zoo for

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Positive Gene Therapy Results

Industry News & Research

…Results”, as well as in its subsequent reports on Form 8-K, all of which are filed with the U.S. Securities and Exchange Commission and available at  www.sec.gov and www.pfizer.com. Source: Pfizer, Inc….

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Milwaukee Adds Virtual Field Trip Portal and a Virtual Weatherization Day – Including Free Weatherization & Grab and Go Bags on Halloween!

COVID-19

…Milwaukee County Executive David Crowley and an afternoon Facebook Live event. Learn more about Milwaukee County’s Energy Assistance Program and the weatherization benefits you are eligible for when you qualify….

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COVID-19: Coronavirus Information and Resources

…a result of the COVID-19 pandemic. Applications are being accepted now through Dec. 18, 2020. Homeowners can apply through a web-based application at https://www.hri-wi.org/mortgage-assistance. Eviction Prevention Program Milwaukee County designated a…

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MASAC Issues Four New Documents

Industry News & Research

…of clinician-patient information sharing. View and download Recommendation on the Use and Management of Emicizumab-kxwh (Hemlibra®) for Hemophilia A with and without Inhibitors. MASAC Document #259 is the latest version…

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Health and Wellness Update #7 from Dr. Valentino

COVID-19

…a potential treatment for COVID-19? Learn more here. https://www.hemophilia.org/Newsroom/COVID-19-Information/How-Your-Plasma-Could-Lead-to-a-Potential-Treatment-for-COVID-19 Health and Exercise Keeping kids active during the pandemic is important – and it helps them burn up all that excess…

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Chronic Pain, CAM and YOU

Health and Well Being, Living with a Bleeding Disorder

…treating depression and reducing anxiety and stress. A multimodal approach includes adjuvant therapies (antidepressants and anticonvulsants); an exercise and/or physical therapy component; and some form of CAM, which allows the…

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New Data for Genentech’s Hemlibra (emicizumab-kxwh) Reinforce Safety Profile in People With Hemophilia A

Industry News & Research

…the ADA-positive participants experienced a treated bleed. In addition, the ADAs disappeared over time, as all study participants tested negative for ADAs at their last visit. Hemlibra also continued to…

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UPDATE: Takeda to Voluntarily Replace Certain BAXJECT® II Reconstitution Devices

Industry News & Research

…at 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: Hemophilia Federation of America (HFA), September…

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Milwaukee Respods to the Coronavirus Outbreak: Latest Updates

COVID-19

…mask upon entry into any indoor Milwaukee County facility or service area. Masks are required on Milwaukee County Transit System buses and at Mitchell International Airport. Bus operators will enforce…

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Show and Tell: Disclosing a Diagnosis in the School Setting

Living with a Bleeding Disorder

…on our son, we would drop what we were doing and arrive as soon as possible. If an accident did happen, it usually wasn’t necessary to give my son an…

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Save-the-Date for our 2024 Best Bloody Competitions! Tickets on Sale Next Week!

GLHF News

…a great Bloody in Milwaukee, Madison or Green Bay, reach out to Tomi at tvandergriff@glhf.org. Follow GLHF’s social media, including Facebook (@WIBloodDisorder) and Instagram (@WIBlooddisorder), as well as our Events Calendar for more…

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CDC Issues Alert on New COVID-linked Disorder

COVID-19

…https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(20)31094-1/fulltextexternal icon 4Verdoni L, Mazza A, Gervasoni A, Martelli L, Ruggeri M, Ciuffreda M, Bonanomi E, D’Anitga L. An outbreak of severe Kawasaki-like disease at the Italian epicentre of the…

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Good News! @GovEvers Signs Bipartisan #steptherapy Legislation into Law!

Advocacy & Legislation

for all patients! Thousands of #WI patients with chronic conditions have better access to the right treatments! Please see several links for more information. https://www.nbc15.com/content/news/Evers-set-to-sign-drug-step-therapy-bill-512466942.html https://www.channel3000.com/news/evers-signs-drug-step-therapy-bill/1093564782 https://www.jsonline.com/story/news/politics/2019/07/09/tony-evers-signs-bill-making-easier-get-prescription-drugs/1684843001/      …

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CSL Behring Announces the First Patient has Received FDA ApprovedHEMGENIX® (etranacogene dezaparvovec-drlb) for Hemophilia B

Industry News & Research

…of Hematology (ASH) 2022 Annual Meeting and Exposition and at The European Association for Haemophilia and Allied Disorders (EAHAD) 2023 Annual Meeting continue to reinforce the potential long-lasting efficacy and

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NBDF Celebrates HHS Final Rule Strengthening Protections Against Disability Discrimination

Advocacy & Legislation, Health and Well Being, Living with a Bleeding Disorder

…America (HFA) in celebrating a historic triumph that resonates deeply with all individuals and families living with inheritable bleeding disorders and disabilities, as delineated within prevailing federal regulations.  This announcement…

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Takeda Raises Issue with some BAXJECT® II reconstitution devices for use in conjunction with RECOMBINATE and RIXUBIS® in the U.S.

Industry News & Research

Takeda recently raised an issue with some BAXJECT® II reconstitution devices produced between October 2021 and January 2022 for use in conjunction with RECOMBINATE [Antihemophilic Factor (Recombinant)] and RIXUBIS® [Coagulation…

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A Parent’s Story of Learning, Making Connections and Finding Support

Living with a Bleeding Disorder

and learn.” She added, “The kids had an amazing time. I knew they were safe, close to us and having a blast. And, I learned that it’s ok to not…

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Free Educational Videos on the use of Novel Non-Factor Therapies

Industry News & Research, Living with a Bleeding Disorder

…products and emerging novel therapies still in development. Topics include Understanding Mechanisms of Action and Utility of Novel Treatments for Hemophilia A and B; Shared Decision-Making in the Age of…

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Statement from Patient Groups in Response to Court Ruling on Cost-Free Coverage of Preventive Health Services

Industry News & Research, Living with a Bleeding Disorder

…access these critical services.” The AIDS Institute American Cancer Society Cancer Action Network American Heart Association American Kidney Fund American Lung Association Arthritis Foundation Cancer Support Community Cystic Fibrosis Foundation…

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