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The WFH Research community to be showcased at ISTH 2023 Congress

At the ISTH 2023 Congress this month, the World Federation of Hemophilia (WFH) will be showcasing a series of posters and presentations of special interest to researchers and PWBDs alike. The posters and presentations will cover a wide range of topics of interest to attendees who want to keep abreast of the developments that are changing our field today, and who want to learn more about how the WFH is playing a key role in those developments.

Also available in: Français Español

Here’s an overview of what the WFH research team is offering at the ISTH 2023 Congress:

 

Date

Poster

Description

Sunday, June 25
3:45 p.m. to 4:00 p.m.

n/a

This 15-minute presentation will provide an update on the WFH Gene Therapy Registry, a global resource for long-term follow-up of people with hemophilia treated with gene therapy. 

Sunday, June 25

6:30 p.m. to 7:30 p.m.

PB0191

This poster introduces myGTR, a new patient engagement tool from the WFH Gene Therapy Registry (GTR) that will help gather patient-reported outcome data directly from patients who have received gene therapy. 

Sunday, June 25
6:30 p.m. to 7:30 p.m.

PB0179

Join us on Sunday at Poster PB0179 showcasing the results of a WBDR funded research study comparing the impact of on-demand versus prophylaxis treatment regimens on health-related quality of life in people with hemophilia in India.

Monday, June 26 

6:30 p.m. to 7:30 p.m.

PB0628

Learn more about the WFH Living Guidelines Model, designed to provide up-to-date guidance based on the latest research and best practices.

Monday, June 26
6:30 p.m. to 7:30 p.m.

 

PB0827 and PB0837

These two posters focus on people with von Willebrand disease (VWD):  1) featuring the first global data collection on people with VWD in the WFH World Bleeding Disorders Registry (WBDR), and 2) an analysis of VWD by region and economic status from the WFH Annual Global Survey.

Monday, June 26
6:30 p.m. to 7:30 p.m.

PB0637

Join us on Monday to learn more about the epidemiological, clinical, and radiological profile of articular pathology (joint disease) in the Cameroonian hemophilia cohort – a WBDR funded research study. 

Tuesday, June 27
6:30 p.m. to 7:30 p.m.

PB1254

Find out more about the WFH Shared Decision-Making Tool for hemophilia treatment on Tuesday, June 27. This tool designed to help patients and clinicians make informed decisions about treatment based on the evidence and the patient’s individual needs and preferences.

Join us at the ISTH 2023 Congress to see the full range of posters and learn more about the latest research and advances in our field!

To find out more about the research and education work that the WFH does, please click here.

We’ve accomplished a lot this year, we need your help to continue strong.

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Disclaimer

The information on the WFH website is provided for general information purposes only. The WFH does not engage in the practice of medicine and under no circumstances recommends particular treatment for specific individuals. For diagnosis or consultation on a specific medical problem, the WFH recommends that you contact your physician or local treatment centre. Before administering any products, the WFH urges patients to check dosages with a physician or hemophilia centre staff, and to consult the pharmaceutical company’s printed instructions.

While every effort has been made to ensure the accuracy of the information on this site, the WFH does not guarantee the information is accurate, and is not responsible in any way whatsoever for damages arising out of the use of this website or any of the information contained herein.

Messages posted to WFH discussion forums, Facebook, Twitter, and other social media platforms do not represent the opinions of the World Federation of Hemophilia, its staff, or Board of Directors. The author of a message is solely responsibility for its content. Information posted on WFH social networks and platforms should never be a substitute for individualized professional medical advice, even when the author has medical qualifications or is considered an authority. Information posted to a discussion group should not be used to diagnose or treat a specific health problem without consulting a qualified healthcare professional. The WFH recommends that you contact your physician or local treatment centre if you have any individual questions or concerns.

References and links to other websites or references to other organizations, products, services, or publications do not constitute endorsement or approval by the WFH. The WFH is not responsible and assumes no liability for the content of any linked websites.

Fraud Alert

Unauthorized solicitations – Warning

The WFH has been made aware of various correspondences—circulated via e-mail and telephone—coming from individuals impersonating WFH staff or falsely stating that they are associated with the WFH. These correspondences, which may seek to obtain money using the name of someone affiliated with the WFH, are fraudulent and come from outside of our organization.

If you receive a suspicious solicitation, exercise extreme caution. In the case of an email, look at the email address to see if it looks suspicious (for example, all WFH emails come from @wfh.org).

We are asking you to remain vigilant, and if you have any doubts about the correspondence, please forward the email to the WFH at [email protected] or call +1 514-875-7944.