Could a Cure for Hemophilia Be Personalized?
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….
Genentech Issues Statement on Hemlibra Particles; MASAC Responds
Industry News & Research
October 7, 2019 Today, Genentech provided the following statement regarding reports of particulate matter in vials of Hemlibra. You can read Genentech’s…
HFA and NHF Share an Update on Product Safety Conversation with the FDA
Industry News & Research
October 7, 2019 HFA and NHF are pleased to share this brief update with the community concerning a recent meeting we had with the…