Are you living with Von Willebrand Disease (VWD)? Your voice matters, and now is the time to make it heard! CSL Behring, is conducting a survey for people living with VWD.
The aim of the survey? The aim is to build patient consensus to define how standards of care in VWD could be improved and achieved equitably in the UK & Ireland, and to identify any recommendations by which this can be realised within the healthcare system.
How Can You Get Involved? Participating in the survey is easy. Simply click on the link provided here to access the survey questionnaire.
What to Expect?
This survey follows a Delphi consensus methodology and considers:
- Identification of VWD
- Optimal role of primary care in the VWD pathway
- Awareness of VWD symptoms amongst social care and associated services (to allay potential safeguarding concerns re bruising in children)
- Supporting VWD and women’s health (e.g., before, during and after pregnancy)
- Treatment of symptoms or causes
- Holistic approach to VWD care
- Monitoring
- Alternatives to NHS providers
- Equity and access to VWD care
- Minority groups
To help achieve this, people living with VWD are encouraged to review consensus statements that were developed by a Steering Group of patients living with VWD.
Spread the Word! We encourage you to share this survey opportunity with other people with VWD. The more voices we hear, the greater impact we can make together in advancing patient care for VWD.
Take the Survey Now and Make Your Voice Heard!
This project has been commissioned by CSL Behring. This project is being managed and delivered by Triducive (a specialist healthcare consultancy) on behalf of CSL Behring. The results of this survey will be discussed by the Steering Group, and the final outputs of this project will be published in a peer-reviewed journal.