News
Sangamo Announces First Patient Treated in Hemophilia B Gene Therapy Trial
Industry News & Research
Sangamo Therapeutics, Inc. recently announced it has treated the first patient in a Phase 1/2 clinical trial evaluating SB-FIX, the company’s investigational…
NHF Statement on Texas vs. United States Lawsuit
Advocacy & Legislation
On December 14, 2018, a Texas judge ruled in Texas vs. United States, a case challenging the constitutionality of the Affordable Care…
To Play or Not to Play?
Living with a Bleeding Disorder
by: Derek Markley As a father, I will be the first to say that learning about hemophilia leads to a number of…
Copay Accumulator Adjustments: What Are They and How They Can Affect You
Advocacy & Legislation
In the age of high deductibles and patient out of pocket expenditures, more and more people depend on copay assistance to afford…
Two New MASAC Documents Issued
Industry News & Research
The National Hemophilia Foundation’s (NHF) Medical and Scientific Advisory Council has issued two new documents on November 21, 2018 that were approved…
Inhibitor Chapter Updated in Nurses’ Guide to Bleeding Disorders
Industry News & Research
The National Hemophilia Foundation’s (NHF’s) Nursing Working Group continues to revise and expand its Nurses’ Guide to Bleeding Disorders (NGBD). The latest chapter that has…
Results of Bayer’s PROTECT VIII Extension Study Announced
Industry News & Research
Bayer announced findings from an analysis of the PROTECT VIII extension study. This study found that long-term safety and efficacy was consistent…
Bioverativ and Sobi Release Long-Term Study Results for Extended Half-Life Therapies
Industry News & Research
Swedish Orphan Biovitrum AB (Sobi) and Bioverativ Inc. announced the results of ASPIRE and B-YOND, the most comprehensive long-term studies of extended…
GLHF’s First Men’s Retreat Offered as Part of Community Connection Series
GLHF News
In early October, GLHF hosted a Men’s Retreat at the Blue Harbor Resort in Sheboygan as part of Great Lakes Hemophilia Foundation’s…
Poinsettia and Wreath Sale Discontinued
GLHF News
As the holiday season gets underway, you might be wondering — is Great Lakes Hemophilia Foundation (GLHF) offering poinsettias and wreaths for sale this…
Introducing GLHF’s New Website, Logo and Colors
GLHF News
Big news! We are proud to share our new website which is part of our refreshed identity. The updates show the evolution…
Unite for Bleeding Disorders Walk Raises Funds for Bleeding Disorders Community
GLHF News
There’s a tremendous amount of energy and camaraderie when 550 dedicated walkers raise nearly $80,000 for the bleeding disorders community. In September,…
GLHF Welcomes New Regional Coordinator and Special Events Coordinator to its Team
GLHF News
We are proud to announce that Kaveh Shabtaie, MPH, and Julie Pahnke, MS, have joined the GLHF team! Kaveh has accepted a…
Bayer Receives FDA Approval for Jivi, New Hemophilia A Treatment With Step-Wise Prophylaxis Dosing Regimen
Industry News & Research
Jivi’s extended half-life allows for twice-weekly initial dosing and may be adjusted to every five days and further individually adjusted to less…
A Parent’s Story of Learning, Making Connections and Finding Support
Living with a Bleeding Disorder
Deana’s son, Raffi, was diagnosed with severe hemophilia A when he was seven months old. “He had strange bruising to the point…
Scholarship Spotlight — Professional Pianist, Kangwoo Jin Living with Hemophilia and Pursuing his Passion
Living with a Bleeding Disorder
“I’m always thankful that I can still play the piano and make the music I can,” said Kangwoo, who began playing piano…
GLHF’s Camp Director, Karin Koppen, Reflects on Five Years of Growth and the Future
GLHF News
More than five years ago, GLHF brought together all four Wisconsin Hemophilia Treatment Centers with the goal of starting a summer camp…
They Thought Hemophilia Was a ‘Lifelong Thing.’ They May Be Wrong.
Industry News & Research
In a recent New York Times article by Gina Kolata, scientists are edging closer to defeating a longtime enemy of human health:…
Tim Ringgold Delivers Musical Keynote that Inspires and Motivates
GLHF News
Tim Ringgold Delivers Musical Keynote that Inspires and Motivates “Frame it anyway you want,” sang Tim. “It’s all what you make of it,…
Tracie’s Journey as a Mother and Advocate
Advocacy & Legislation
When Tracie and her husband Tim had their son Zach, everything seemed perfect. Shortly after his birth, doctors noticed some bruising on…
UniQure Reports Successful Delivery of FIX Gene Despite Antibodies
Industry News & Research
UniQure presented new hemophilia B clinical trial data on May 19, 2018 at the American Society of Gene and Cell Therapy (ASGCT)…
A Mother’s Perspective on Her Son’s Life with Hemophilia
Living with a Bleeding Disorder
Jessica details her son’s life with hemophilia Some might consider Dean to be “lucky,” because although he has severe hemophilia, he is…
Active Dad Doesn’t Let Hemophilia Slow Him Down
Living with a Bleeding Disorder
He’s Completed Ten Triathlons Since 2015! David Varney was diagnosed with Hemophilia B when he was 3 months old. He has never…
A Day in Owen’s Life
Living with a Bleeding Disorder
A Day in the life of this busy 2-year old, as told by his incredible parents, Stacie and Kyle Owen is just…