News
MASAC Letter to the Community Regarding the Coronavirus Disease 2019
COVID-19
The Centers for Disease Control and Prevention (CDC) is responding to the rapidly evolving situation of the outbreak of respiratory disease (COVID-19)…
Medexus Acquires XINITY® from Aptevo
Industry News & Research
Aptevo Theraoeutics has sold their recombinant factor IX product IXINITY® to Canada-based Medexus Pharmaceuticals. IXINITY®, which first received approval from the U.S….
Partners in Bleeding Disorders Education Program Launches Revised Module
Industry News & Research
The Partners in Bleeding Disorders Education Program has announced the launch a new version of “Understanding Hemophilia,” a six-part online learning activity for clinicians…
Emergency Department Guidelines Now Available in Multiple Formats
Industry News & Research
It is critical that an individual with a bleeding disorder who presents in an emergency department (ED) be triaged and administered care…
NHF, WFH, EHC Monitor Coronavirus Impact on Bleeding Disorders Community
Industry News & Research
The National Hemophilia Foundation (NHF) has been monitoring the latest information on the current coronavirus (2019-nCoV) as it pertains to the bleeding…
Novo Nordisk Announces Launch of New Factor VIII Therapy
Industry News & Research
Novo Nordisk has announced the launch of ESPEROCT®, the company’s long-acting recombinant factor VIII product for the prevention and treatment of bleeding…
Bombardier Climbs the Seven Summits — Proving That with Support and Guidance, We Can All Achieve our Dreams
GLHF News
Chris Bombardier has never let severe hemophilia stop him. On January 6, 2018, Chris became the first person with hemophilia – and…
Medexus Acquires XINITY® from Aptevo
Living with a Bleeding Disorder
Aptevo Theraoeutics has sold their recombinant factor IX product IXINITY® to Canada-based Medexus Pharmaceuticals. IXINITY®, which first received approval from the U.S….
Medscape Launches Activity for Emergency Department Providers
Industry News & Research
An important new educational activity has launched for healthcare providers who practice in an emergency department setting. “Evaluation and Management of Hemophilia…
FDA Releases Guidance Documents for Gene Therapies
Industry News & Research
The U.S. Food and Drug Administration (FDA) has released several new gene therapy guidance documents to provide “regulatory clarity” for developers of…
Patient Groups Urge Supreme Court to Swiftly Take Up Health Care Case
Industry News & Research
Washington, D.C.—January 15, 2020— Patient and health advocacy groups representing millions of Americans with pre-existing conditions will file an amicus curiae or friend of the…
NHF’s 72nd Bleeding Disorders Conference
Industry News & Research
Please join us at NHF’s Bleeding Disorders Conference, August 6-8, 2020 in Atlanta, Georgia. Registration is now open! New this year! We…
Study Shows Higher Postpartum Hemorrhage in FXI Deficiency Patients Post Cesarean
Industry News & Research
Researchers from the Beth Israel Deaconess Medical Center in Boston, MA conducted a study on the link between postpartum hemorrhage (PPH) and…
Show and Tell: Disclosing a Diagnosis in the School Setting
Living with a Bleeding Disorder
by: Cazandra Campos-MacDonald School’s in session! And with the start of a new school year comes a question for the principal: “When…
Could a Cure for Hemophilia Be Personalized?
Industry News & Research, Living with a Bleeding Disorder
Has your hematologist ever asked that your child have pharmacokinetic (PK) testing? Chances are, the doctor wants to know how factor behaves…
GLHF Sponsors Inaugural Consumer Empowerment Medical Symposium
GLHF News
“GLHF has been a great help supporting our family with these types of events where we interacted with both sides of our…
UniQure Announces Interim Hemophilia B Gene Therapy Trial Data
Industry News & Research
uniQure recently announced interim clinical trial data related to a phase IIb clinical study of etranacogene dezaparvovec (AMT-061), the company’s investigational gene…
Two Gene Therapy Medscape Activities Recertified
Industry News & Research
The National Hemophilia Foundation (NHF) is pleased to announce that two educational activities in the “Clinical Advances in Gene Therapy for Hemophilia”…
Study Will Examine Brain Development in Young People with Hemophilia
Industry News & Research
A new observational study funded by Novo Nordisk, which is currently in the recruitment phase, will seek to better understand how hemophilia…
2nd Annual Men’s Retreat Offers Unique Opportunity for Shared Connections
GLHF News
This past September, GLHF hosted its second annual Men’s Retreat (ages 21+) at a beautiful location on Castle Rock Lake. Men from…
Unite for Bleeding Disorders Walk – A Statewide Celebration to Raise Funds Bleeding Disorders Community
GLHF News
Every year, families and friends join together for the Unite for Bleeding Disorders Walk — a statewide celebration at the Milwaukee County…
Family Camp Broadens Scope While Providing a Bonding Experience for Families Impacted by Bleeding Disorders
GLHF News
GLHF hosted its eleventh year of Family Camp October 4-6 in Campbellsport, WI. We are thrilled to return to the original Family…
NHF and HFA Letter to Genentech Announcement of Particulate Matter in Emicizumab (HEMLIBRA)
Industry News & Research
October 10, 2019 The National Hemophilia Foundation and the Hemophilia Federation of America continue to follow up on issues arising from Genentech’s recent…
Octapharma’s Wilate® Receives Expanded Approval from FDA
Industry News & Research
October 9, 2019 Octapharma recently announced that their plasma-derived von Willebrand Factor (VWF)/Factor VIII (FVIII) product Wilate®, was approved by the U.S….