News
Supreme Court Decision and Genetic Testing
Health and Well Being, Industry News & Research
by: Laurie Kelley Thoughts on how the Supreme Court decision on abortion might affect genetic testing outcomes. Read more here. The recent…
Does Gene Therapy Face Uphill Battle? Gene Therapies for Hemophilia Treatment Will Face Strong Market Headwinds, Research Suggests
Industry News & Research
Solid market position of Hemlibra and strong prescriber interest in RNAi and TFPI treatment options, combined with patient concerns regarding gene therapies,…
Get Ready for the Hemocraft ™ Challenge! Loosely Based off of the Hit Video Game Minecraft, Hemocraft Teaches Kids the Importance of Staying Prepared and Sticking to a Treatment Plan!
Living with a Bleeding Disorder
What is Hemocraft ™? In partnership with the Entrepreneurial Game Studio at Drexel University, the National Hemophilia Foundation, and members of the…
Gallery Captures Hemophilia Lives: Photographer Rankin Captures The Humanity in People with Hemophilia
Health and Well Being, Living with a Bleeding Disorder
“Portraits of Progress” is a project in partnership with CSL Behring that charted 60 years in the fight against hemophilia, and that…
Gene Therapy and Bleeding Disorders: Where Are We Now, and What’s on the Horizon?
Industry News & Research
The National Hemophilia Foundation’s 16th Workshop on Novel Technologies and Gene Transfer for Hemophilia, held in November, addressed these questions and more….
Hemophilia B— An Excellent Candidate for Gene Therapy
Industry News & Research
Current hemophilia B treatments offer strong protection from bleeds, but impact patient lifestyle and require consistent infusions to keep protection levels high.1…
Making Sense of It All – Gene Therapy
Industry News & Research
What exactly is a gene? What happens when genes mutate? And can gene therapy research help solve problems related to mutations? Learn…
Paper Features Q&A Resource on Shared Decision Making and Gene Therapy
Industry News & Research
The Q&A resource highlighted here is meant to encompass all stages of a patient’s decision making journey in gene therapy. As investigational…
BioMarin Presents Abstract on Vector DNA Transmission Risk at ISTH
Industry News & Research
The focus of the abstract is the investigational hemophilia A gene therapy, valoctocogene roxaparvovec. BioMarin recently shared findings from a phase 3…
The High Cost of Hemophilia
Advocacy & Legislation, Health and Well Being, Industry News & Research
Just one bleed in people with severe hemophilia A receiving prophylaxis has the potential to negatively affect health-related quality of life, and raise…
Prophylactic Therapy for Glanzmann Thrombasthenia Moves Towards Clinical Trials
Industry News & Research
Glanzmann Thrombasthenia is an ultra-rare inherited bleeding disorder that is characterized by poorly functioning platelets. The recent Congress of the International Society…
Sanofi Provides Fitusiran Trial Updates at ISTH
Industry News & Research
These updates were presented during the International Society on Thrombosis and Haemostasis (ISTH) Congress in London. Sanofi recently shared new clinical trial…
NHF Addresses Potential Contraception Bans
Advocacy & Legislation
A statement from the National Hemophilia Foundation. Abortion and contraception can both be critical components of an individual’s health care journey. However,…
Read the HFA’s Latest Legislative Updates – State of the States July 2022
Advocacy & Legislation
Read the Hemophila Federation of America’s (HFA) latest legislative update – State of the States, July 2022. This update includes information on…
Camp Klotty Pine, August 8-13, in Kewaskum!
GLHF News
Camp Klotty Pine, August 8-13, is in Kewaskum. Children with bleeding disorders experience life-changing experiences that are exciting, empowering and educational in…
GLHF’s Inaugural Green Bay’s Best Bloody was a Success!
GLHF News
GLHF’s inaugural Green Bay’s Best Bloody was held July 10. “The support from the Green Bay Community; event sponsors; donors; volunteers; and the local media…
Novel Pilot Program to Focus on Genetic Diseases and Precision Medicine
Industry News & Research
A newly launched program is designed to advance a diagnostic and precision medicine approach in newborns. The Rady Children’s Institute for Genomic…
NHF Requests Risk Evaluation and Mitigation Strategy for Pending Gene Therapy Treatments
Industry News & Research
Read a citizen’s petition that was formally submitted to the Food and Drug Administration by NHF. On July 1, the National Hemophilia…
New Genotyping Recommendations Issued by MASAC
Industry News & Research
The new recommendation describes the proven benefits of genotyping people with hemophilia NHF’s Medical and Scientific Advisory Council (MASAC) has approved a…
NHF Responds to Roe v. Wade Reversal
Advocacy & Legislation
NHF Statement in Response to the June 24, 2022 Supreme Court Ruling “The National Hemophilia Foundation (NHF) is aware of today’s Supreme…
Black Women with Bleeding Disorders Are Striving to Be Seen and Heard
Health and Well Being, Living with a Bleeding Disorder, Women with Bleeding Disorders
by: Andrea Collier Black women who have inheritable blood and bleeding disorders often face obstacles all along their journey—from diagnosis to treatment…
Parents in the Bleeding Disorders Community Share Their Best Advice
Health and Well Being, Living with a Bleeding Disorder
HemAware asked parents for their best advice on what has helped them navigate their children’s bleeding disorders in the first few years…
Ask a Social Worker: How Dangerous Is Cutting for Someone with Hemophilia?
Health and Well Being, Living with a Bleeding Disorder
Understanding the reasons why people self-harm, and what you can do to help. Ask a Social Worker is a monthly column featuring…
The Role of Pharmacy Benefits Managers (PBMs)
Advocacy & Legislation
Pharmacy benefits managers (PBMs) are middlemen that create and administer drug formularies on behalf of health insurers, self-insured employers, Medicaid, and other…