myWBDR

myWBDR is a mobile application designed for individuals diagnosed with hemophilia and/or von Willebrand disease (VWD) who are enrolled in the World Bleeding Disorders Registry (WBDR). It empowers patients by offering them a user-friendly platform to effortlessly track and monitor bleeding episodes, pain levels, treatments, and overall health status using EQ-5D-5L and PROBE questionnaires.

The patient-reported data collected through myWBDR complements clinician-entered data in the WBDR to provide a real view of the everyday experience of PWH. 

HOW DO I SIGN UP FOR myWBDR?

WBDR icon

Are you a WBDR patient diagnosed with Hemophilia or von Willebrand disease (VWD)? Are you interested in tracking your own bleeds and health status using myWBDR?
Here are two options for signing up:

Through your HTC clinician (recommended):
You can request your clinician to sign you up directly in the WBDR

Through your mobile device

  1. Download the myWBDR app from the Apple App Store or from the Google Play Store
  2. Select your preferred language and click on “Sign up”
  3. Complete the information on the sign-up page
  4. Click on “Find Me”. This is to identify you as a WBDR patient and to associate your WBDR account with the myWBDR app
  5. If the myWBDR app can associate you with the WBDR account, you will be prompted to create a username and password. If the myWBDR app cannot associate you with the WBDR account, please contact your HTC to sign up
  6. View and accept the terms of use and the privacy policy
  7. Click on “Sign up” and you will receive an email from myWBDR registration to complete the process

Now Available

myWBDR is available in the following languages: Arabic, English, French, Hindi, Portuguese, Russian, Spanish, Thai, Urdu, and Vietnamese.

For more information, please contact us at: [email protected].

TERMS OF USE AND PRIVACY POLICY

All information entered in myWBDR is anonymous and confidential. Patient names and other identifying information are not saved.

SEARCH

Also available in: English

Disclaimer

The information on the WFH USA website is provided for general information purposes only. The WFH USA 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 USA recommends that you contact your physician or local treatment centre. Before administering any products, the WFH USA 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 USA 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 USA 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 USA 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 USA 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 USA. The WFH USA is not responsible and assumes no liability for the content of any linked websites.

Fraud alert

Unauthorized solicitations – Warning

The WFH USA has been made aware of various correspondences—circulated via e-mail and telephone—coming from individuals impersonating WFH USA staff or falsely stating that they are associated with the WFH USA. These correspondences, which may seek to obtain money using the name of someone affiliated with the WFH USA, 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 USA emails come from @wfhusa.org or @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 USA at [email protected] or call 1-877-417-7944.