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The 2019 Unite for Bleeding Disorders Walk is September 28. Start Forming Your Walk Team Today!
GLHF News
…blood safety. Funding research to develop better treatments. Building a supportive community. Promoting choices that lead to optimal health. Start forming your walk team today! Visit our website for information….

Report Focuses on Two Cases of Sporadic CJD in the UK
Industry News & Research
…of patients deceased and diagnosed with sporadic type Creutzfeldt-Jakob Disease (sCJD) in the United Kingdom (UK). sCJD is the most common type in a group of rare neurodegenerative diseases characterized…

Introducing NHF’s Community-Powered Registry, MyBDC
Industry News & Research
…community members, and add the communities voice to the conversation. How MyBDC works: Registered participants receive an initial survey followed by annual surveys Surveys collect data such as demographics, bleeding…

NHF Letter to the Community on COVID-19
COVID-19
The greatest asset at NHF is the community we serve – our family of staff and volunteers. We are aware of the concerns in the community about the COVID-19 outbreak…

NHF’s Bleeding Disorders Conference is Fully Virtual: August 1-8, 2020!
GLHF News
…education to each of you. One of the greatest strengths of the bleeding disorders community is our ability to adapt and reinvent ourselves when needed. NHF will work diligently to…

BDC 2020 Updates and Transition to Virtual
Industry News & Research
Dear Community Members, The National Hemophilia Foundation’s priority has always been the health and safety of the bleeding disorders community. As the COVID-19 pandemic unfolds, it is clear that in…

NHF’s next Spanish Townhall COVID-19 webinar is May 19, 2020
COVID-19
…seminario de web: Ayuda financiera: Copiando con COVID-19, el martes 19 de mayo a las 6:00 p.m. ET (5 pm CT). To register, visit NHF’s website in the near future….

HFA’S COVID-19 RELIEF FUND
COVID-19
As COVID-19 threatens the livelihood of families across the U.S. who are part of the bleeding disorders community, the need for a national resource to apply for and receive emergency…

New Online Space for Black/African Americans with Bleeding Disorders
Industry News & Research
…people who understand them. That prompted the creation of Bleeding Disorders and Black Communities, a private online community hosted by HealthUnlocked, a UK-based social health website. Participants who join will…

Mylan Initiates Voluntary Nationwide Recall of Four Lots of Tranexamic Acid Injection, USP Due to Carton Label Mix-Up
Industry News & Research
…January 2020 Safety Summit), NHF and HFA commit to keeping the bleeding disorders community informed as we gather further information about this recall. For an explanation of the FDA’s product…

Together We Can! #GivingTuesday is December 1. Donate Today!
GLHF News
…has been coming together to stand up, help out, give back and heal. Whether that’s through donations to community organizations, celebrating doctors and nurses at shift changes, or reaching out…

NHF: Vaccination and COVID-19 Update
COVID-19
…be reduced by the available and soon to come vaccines. According to the CDC COVID Data Tracker, 56.3 million vaccines have been administered in the US. The good news is…

Op-Ed Outlines the Value of Copay Assistance and the Challenges of Copay Accumulator Adjustment Programs
Advocacy & Legislation, GLHF News
…when no other options exist. A copay accumulator – or accumulator adjustment program – is a strategy used by insurance companies and Pharmacy Benefit Managers (PBMs) that stop manufacturer copay…

Is Your Child Ready to Embrace Camp This Year? Join us for Camp Klotty Pine August 8-13!
GLHF News
…your kids asking to come back to GLHF’s Camp Klotty Pine year after year. But, all of those things are small compared to the spark ignited within your child the…

The 2023 Unite for Bleeding Disorders Walk is September 23! Register Your Walk Teams Today!
GLHF News
…five walkers to hundreds. Forming teams is a great way to build company morale and camaraderie among co-workers. Families and friends can join together to walk for a common cause…

Coming Soon: CDC to add COVID-19 Information Collection to the Community Counts Registry
COVID-19
In the coming months, the Centers for Disease Control and Prevention will be adding COVID-19 Information Collection to the Community Counts Registry. COVID-19 continues to be a major public health…

New Hemophilia Gene Therapy Video Presentations Available
Industry News & Research
…screening; better coordination of laboratory/diagnostic testing, and reimbursement planning. Dr. Reiss’ talk offers an insight into the preparedness, treatment, and monitoring involved in administering hemophilia gene therapies to patients. Please…

Save-the-Date for our 2024 Best Bloody Competitions! Tickets on Sale Next Week!
GLHF News
Tickets on sale December 18! Holiday-priced tickets for Milwaukee’s, Madison’s and Green Bay’s Best Bloody will be on sale Dec. 18 – Jan. 1! Stay tuned to our website and social media…

GLHF Celebrates 50 Years of Educating, Supporting and Advocating for the Bleeding Disorders Community of WI
GLHF News
…orders community, with innovative programs and initiatives like Camp Klotty Pine, the Wisconsin Bleeding Disorders Conference, patient financial assistance, Wisconsin Legislative Day and more. Watch our website and social media accounts (@wiblooddisorder)…

Does Your HTC Administer Gene Therapy?
Gene Therapy, Industry News & Research, Living with a Bleeding Disorder
…treatment, Hemgenix, available. This tracker is updated on a weekly basis as the company continues to train more and more sites. Go here. Source: LA Kelley Communications, Inc., May 2024…

Investigational Sub-Q von Willebrand Disease Therapy Put on Fast Track
Industry News & Research
…biotechnology company based in San Francisco, CA. VGA039 is a subcutaneously-delivered monoclonal antibody therapy designed to target Protein S as a means of restoring proper blood clotting in people with…

FDA Approves Subcutaneous Therapy for Hemophilia Patients with Inhibitors
Industry News & Research
…of therapy allows treaters to forgo the need for regular prophylaxis with traditional, intravenously infused factor replacement. “The development of inhibitors remains the most serious treatment-related complication for people living…

Unite for Bleeding Disorders Walk
Get DetailsSave-the-date: The annual Unite for Bleeding Disorders Walk will be...

Clinical Practice and Hemophilia Gene Therapy the Focus of New Accredited Activity
Industry News & Research, Living with a Bleeding Disorder
…biotechnology company based in San Francisco, CA. VGA039 is a subcutaneously-delivered monoclonal antibody therapy designed to target Protein S as a means of restoring proper blood clotting in people with…