Community Pulse

Community Pulse

In-depth profiles and stories about people in the bleeding disorders community.

 

Bleeding Disorders Conference Preview
The National Hemophilia Foundation’s (NHF) 74th Annual Bleeding Disorders Conference (BDC) will take place August 25-27, 2022. After two years...
Hemophilia B—an excellent candidate for gene therapy
Gene therapy aims to address the root cause of hemophilia B and help people produce stable and protective levels of...
Mutations & Gene Therapy Research
What exactly is a gene? What happens when genes mutate? And can gene therapy research help solve problems related to...
Black Women with Bleeding Disorders Are Striving to Be Seen and Heard
Ronia Cole, 52, of Redford Township, Michigan, has lived with a bleeding disorder since she was a toddler. “I’d take...
L.A. Aguayo
I was diagnosed with severe hemophilia B at birth. I’m the first person in my family to have a bleeding...
Amy Dunn, MD, Is New Chair of MASAC
Amy Dunn, MD, says a patient she diagnosed with hemophilia during her first year of residency changed the course of...
Ask a Social Worker: How Can I Advocate for My Child with Hemophilia so He Gets the Care He Needs?
Ask a Social Worker is a monthly column featuring questions from the community and answers from members of NHF’s Social...
A Brief History of Gene Therapy: What It Means and Its Promise for the Hemophilia B Community
Over 10,000 individuals worldwide have been treated with various gene therapy products. Gene therapy is a medical treatment that uses...
The Perils of Pain & The Potential for Progress
When Joseph Burke wakes up in the morning, his first question isn’t how he is going to feel today, it’s...
Bleeding Disorders in Pop Culture
Having a rare disease like hemophilia means you don’t often get to see people who share your disease portrayed in...
A New Opportunity to Address Chronic Pain
Randall Curtis, 66, survived life-threatening bleeds in the years before scientists discovered how to make clotting factor for home infusion.
Megan Adediran and her children.
Although my great-grandmother lost four sons to post-circumcision bleeding and my grandmother lost nine sons the same way, I’d never...
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Need Info? Ask NHF!
Contact HANDI, NHF's resource center for additional information on bleeding disorders.