News
Interesting Fictional Teens….With Bleeding Disorders!
Living with a Bleeding Disorder
by Richard J. Atwood Do you ever wonder whether teenage fictional characters with bleeding disorders can foreshadow the future of our community?…
Does Having a Bleeding Disorder Mean I’m at a Higher Risk for Contracting COVID? Q & A.
COVID-19, Living with a Bleeding Disorder
As the world continues to grapple with the COVID-19 pandemic, the bleeding disorders community understandably has many questions about the disease’s specific…
Managing a Bleeding Disorder During a Pandemic
COVID-19, Living with a Bleeding Disorder
As the world continues to grapple with the COVID-19 pandemic, the bleeding disorders community understandably has many questions about the disease’s specific…
GET WIRED WITH HFA
Industry News & Research, Living with a Bleeding Disorder, Women with Bleeding Disorders
Feeling disconnected from knowledge about women’s health and research? Get WIRED with the Hemophilia Federation of America (HFA) is seeking women with bleeding…
Unanswered Questions Remain in Gene Therapy
Gene Therapy, Industry News & Research, Living with a Bleeding Disorder
A recent commentary published in the journal Haemophilia, posits that while clinical trials for hemophilia gene therapy approach conclusion, there remain significant unanswered…
What to Do if You Miss Your Child’s Annual Exam
Living with a Bleeding Disorder
Routine healthcare visits are being held up because of the pandemic, so many parents are missing their children’s annual hemophilia treatment center…
FDA Recommends Additional Data for BioMarin’s Investigational Gene Therapy
Gene Therapy, Industry News & Research, Living with a Bleeding Disorder
Biomarin announced that they received a Complete Response Letter (CRL) from the U.S. Food and Drug Administration (FDA) on August 18th for their…
COVID-19 and VWF
COVID-19, Living with a Bleeding Disorder
Recently, there has been considerable interest in the role von Willebrand Factor (VWF) may play in the complications of COVID-19, the infection…
CSL Acquires Hemophilia B Gene Therapy Candidate from uniQure
Gene Therapy, Industry News & Research, Living with a Bleeding Disorder
CSL Behring recently announced that it has agreed to acquire exclusive global license rights from uniQure, to commercialize etranacogene dezaparvovec (AMT-061), an…
Mental Health
COVID-19, Living with a Bleeding Disorder
The upheaval and fear we experience during COVID-19 can have a lasting impact on our mental health. Learn more about how to…
Health & Exercise
COVID-19, Living with a Bleeding Disorder
How can two balloons keep your kids active? You’d be surprised. This video from Raising Rookies shows an array of games kids…
NHF Webinar Today, June 30: June for Joint Health
COVID-19, Living with a Bleeding Disorder
Join us for an active and educational June for Joint Health webinar. Learn how you can start to form healthy habits by…
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….
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…
Two Gene Therapy Medscape Activities Recertified
Gene Therapy, Industry News & Research, Living with a Bleeding Disorder
The National Hemophilia Foundation (NHF) is pleased to announce that two educational activities in the “Clinical Advances in Gene Therapy for Hemophilia”…
6 Do’s and Don’ts for Better Sleep
Living with a Bleeding Disorder
by Ian Landau Taking Charge In his TED Talk, “Sleep is your superpower,” Matthew Walker, PhD, a professor of neuroscience and psychology…
Casebia Presents Dual Approach to Gene Therapy
Gene Therapy, Industry News & Research, Living with a Bleeding Disorder
Cambridge, Massachusetts-based Casebia Therapeutics recently presented new research on a novel therapy being developed for patients with hemophilia A. Casebia Therapeutics is…
Children’s Storybooks Provide Insight and Education for Kids with Hemophilia
Living with a Bleeding Disorder
LA Kelley Communications has many books back in print that provide the bleeding disorders community with high quality educational materials. Their content…
New Books to Manage Hemophilia for All Ages
Living with a Bleeding Disorder
Global health education company Jumo Health is releasing four new comic books that provide contextual and age-appropriate information for children, teenagers, and…
Who Makes the Decision?
Living with a Bleeding Disorder
by: Derek L. Markley It has been more than eight years since St. Jude Children’s Research Hospital, University College London, and the…
What’s the Best Way to Learn About Your Bleeding Disorder?
Living with a Bleeding Disorder
by: Laurie Kelley Our world is biased toward visual information and learning, because humans are mainly visual beings. From advertising to teaching…
5 Myths and Facts About von Willebrand Disease (VWD)
Living with a Bleeding Disorder
The most prevalent bleeding disorder, von Willebrand disease (VWD), affects more than 3 million Americans, about 1% of the population. And, its…
Be a Part of Making Tough Decisions Now
Living with a Bleeding Disorder
by: Steve Place I have lived for 64 years with mild hemophilia and have voluminous experience, from which I came to my…