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COVID-19: Latest News & Updates

COVID-19, Health and Well Being, Industry News & Research

…hospitalizations and deaths, race and ethnicity data, and more. The County recently updated the dashboard to include additional data breakdowns by municipality, age, and race/ethnicity. These updates are a step…

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Ask a Social Worker: How Can I Convince Someone to Seek Mental Health Treatment?

Health and Well Being

…use disorders. And as always, your local hemophilia treatment center social worker can be a resource. —Kathaleen M. Schnur, LCSW Schnur is a social worker at the Hemophilia Center of…

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PT Study Focuses on Comprehensive Survey of Physical Activities Risks for 101 Activities

Industry News & Research

…may include collection of detailed bleeding data in relation to intensity and specific action/movement associated with the bleed, the treatment regimen prescribed and administered, and the patient’s underlying fitness and

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Four New Documents from MASAC

Industry News & Research

The new guidelines cover recommendations for physical therapy, gene therapy readiness, vaccine guidance, and treatment. Download here. Source: National Hemophilia Foundation…

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Help for People with Substance Abuse

Health and Well Being

…protocols and adherence, patient autonomy, and bleeding event scenarios. Document 279 is a helpful tool for advocating for fair consideration when it comes SUD access on behalf of PWBDs. Download

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Learn More About 2024 Bleeding Disorders Scholarships

Industry News & Research, Living with a Bleeding Disorder

…may include hemophilia, von Willebrand disease, and rare/ultra factor deficiencies. Application deadlines are fast-approaching. Access this link to download a 2024 KCS application and to view the complete list of 2024 scholarships….

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NBDF Releases Hemophilia Fast Facts

Industry News & Research, Living with a Bleeding Disorder

NBDF’s announces the availability of a Hemophilia Fact Sheet. This two-page PDF document was created to fill the need for a current, accessible resource containing basic information about hemophilia. It…

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Join us for GLHF’s GooseChase Challenge Week. Help us Spread Awareness for the Global and Local Bleeding Disorders Community!

GLHF News

To commemorate World Hemophilia Day, we’re challenging the Wisconsin Bleeding Disorders Community to a friendly game of gooseChase! During the week of April 12-19, complete as many missions as you…

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Mental Health: Discussing the Pandemic with Your Child and Helping Your Child Cope with Anxiety and Stress

COVID-19

Discussing the Pandemic with Your Child: The American Academy of Child and Adolescent Psychiatry has a simple fact sheet that will help you navigate discussing the pandemic with your child….

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Genentech Notice on COVID-19, Hemlibra®, and Laboratory Assays

Industry News & Research

…a COVID-19-associated coagulopathy resembling DIC. Further, physicians and laboratories encountering COVID-19 patients may not be very familiar with Hemlibra® and its ability to affect key assay results. The notice which…

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Hemlibra® is known to interfere with certain laboratory assays used to measure blood coagulation.

COVID-19

…a COVID-19-associated coagulopathy resembling DIC. Further, physicians and laboratories encountering COVID-19 patients may not be very familiar with Hemlibra® and its ability to affect key assay results. The notice which…

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GLHF Adds New Resources to Website

GLHF News

…Pain is a serious medical concern in America. For those with a bleeding disorder, pain as a result of a bleeding episode can result in acute and/or chronic pain issues….

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Gene Therapy and Bleeding Disorders: Making Sense of It All

Health and Well Being, Industry News & Research

…mutate? And can gene therapy research help solve problems related to mutations? Learn about all of this and more from the BioMarin Gene Therapy Learning Academy. Read more. Source: National…

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Making Sense of It All – Gene Therapy

Industry News & Research

…cause genetic conditions like cystic fibrosis, Huntington’s Disease, or hemophilia. In hemophilia, a mutated gene affects the body’s ability to produce a protein called Factor VIII (for hemophilia A) or…

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How to Keep Summer Activities Safe for Kids with Bleeding Disorders

Health and Well Being, Living with a Bleeding Disorder

…her safe from injuries? For advice about hemophilia and sports, we turned to Alice Anderson, PT, DPT, PCS, a co-author of the National Hemophilia Foundation’s (NHF’s) Playing It Safe: Bleeding Disorders,…

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Calling all Campers! Get Ready to Join us August 7-12.

GLHF News

…life-long friendships and memories while they swim, canoe, hike, and learn outdoor skills. Camp is also a place of encouragement, mentoring, and education for kids learning to self-infuse and enhance…

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Forty-Five Families will Join us for the Wisconsin Bleeding Disorders Conference June 2-4 in Wisconsin Dells

GLHF News

…the Caregiver? • Advocacy Scenarios • Independence Management • Aging with a Bleeding Disorder • Career and Continuing Education For any questions about this year’s conference, contact Kailee at kfrederick@glhf.org….

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The Importance of Saying No

Health and Well Being

…the importance of saying no. Do you know “no” is a complete sentence? I didn’t until a few years ago when a friend helped me understand the concept. I’m not…

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#CampLife! Camp Klotty Pine Welcomed Campers Home for Another Successful Year!

GLHF News

…to watch the faces of campers as they accomplish a new goal in the health lodge, challenge themselves in an activity, laugh uncontrollably during a silly song or connect with

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Pilot Study Explores Educational Needs of HTC Physical Therapists

Industry News & Research, Living with a Bleeding Disorder

…The most commonly reported challenges anticipated by participants were related to funding and limitations associated with travel, staffing, scheduling, adequate work space, and insurance/reimbursement.   Note that MASAC #275, which…

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Camp Klotty Pine

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Camp Klotty Pine creates magical, life-changing experiences for children living...

How to Keep Summer Activities Safe for Kids with Bleeding Disorders

Health and Well Being, Living with a Bleeding Disorder

…her safe from injuries? For advice about hemophilia and sports, we turned to Alice Anderson, PT, DPT, PCS, a co-author of the National Hemophilia Foundation’s (NHF’s) Playing It Safe: Bleeding Disorders,…

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Learn About Clinical Issues in Women with Bleeding Disorders

Industry News & Research, Women with Bleeding Disorders

…were created for physicians, physician assistants, nurse practitioners, and other clinicians who treat patients with bleeding disorders, including von Willebrand disease (VWD), hemophilia A or hemophilia B. We are sharing…

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Navigating the Complexities of Hemophilia as a Family – In Loving Memory of James F. King, Sr.

GLHF News, Living with a Bleeding Disorder

…— attending school plays, sporting events, graduations and more. Finnian and Liam’s Hemophilia B diagnosis also facilitated involvement in the bleeding disorders community and allowed Liam to attend Camp Bold…

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