The october issue of Hemophilia World is now online!
Report on the Annual Global Survey 2015 now available
The Report on the Annual Global Survey 2015 is now available in print and online at www.wfh.org/globalsurvey. The report includes selected demographic and treatment-related data on people throughout the world with hemophilia (PWH), von Willebrand disease (VWD), other rare factor ...
The WFH 2016 World Congress makes an impact
The WFH 2016 World Congress held this past July was a great success, welcoming a record 5,482 attendees from 137 countries. The event marked the first Congress in the U.S.A. in over 25 years.
WFH President: Education is the other side of the Treatment for All equation
In 1942, The Little Prince author Antoine de Saint Exupery wrote to a friend: “Far from hurting you, being different enriches you.”
WFH Vice President Medical: The future of hemophilia treatment is very promising
Hemophilia treatment has entered an exciting era, with new products making diagnosis and treatment available for a far larger population than ever before, said WHF Vice President Medical Marijke van den Berg, MD, during her VP Medical Plenary address at ...
New inhibitor therapies have the potential to change hemophilia treatment
Considering that the treatment of hemophilia with inhibitors remains problematic, and that inhibitors may be an important consideration for new approaches such as gene therapy, it’s particularly relevant that a session during the Congress examined alternative therapies in the management ...
A new and exciting aspect of the coagulation system
All the players in the coagulation system are known—or are they? Thrombin is a key enzyme in the system that controls clot formation; too much or too little can lead to either thrombosis or hemorrhage.
Gene therapy delivery options explored
This year’s WFH World Congress featured a session where scientists involved in gene therapy approaches to hemophilia provided updates on developments in the delivery of therapies via stem cells, genome editing and liver-directed AAV vectors. David Lillicrap from Queen’s University, ...
The Face of Inhibitors: Patients, families, and caregivers share their stories
Inhibitors affect between 20 and 40 percent of people with severe hemophilia A. During the WFH 2016 World Congress, patients, families, and caregivers impacted by this rare condition participated in a panel discussion that put a face on their trials ...
WFH signs memorandum of understanding with the Asia Pacifi c Hemophilia Working Group to support healthcare professionals in the region
The World Federation of Hemophilia (WFH) will collaborate with the Asia Pacific Hemophilia Working Group (APHWG) to help improve care for people with hemophilia and other hereditary bleeding disorders in the Asia Pacific region.
Think of self-care in a new way
In 2007, Patrick Lynch’s younger brother, Adam, died of an intracranial bleed at age 18. Both Patrick and Adam were born with severe hemophilia A.
Donors of Congress: Ekawat Suwantaroj
One of the best memories at the WFH 2016 World Congress Resource Centre came in the form of Ekawat Suwantaroj, a talented, smiling member of the bleeding disorders community from Bangkok, Thailand.
Lessons from NASA: What is an appropriate level of risk?
Since the 1980s, when about 10,000 people with hemophilia tested positive for HIV after receiving contaminated blood, assessing and managing risk has been a core principle in the bleeding disorders community. This applies not only to blood supplies that can ...