Expanded website will raise awareness of von Willebrand disease

Launch of the improved site is a central component of a global initiative aimed at increasing awareness of von Willebrand disease (VWD). As part of our commitment to improving the lives of people with bleeding disorders around the world, Octapharma is a proud supporter of this initiative, of the VWDtest.com Steering Committee, and of Dr Fernando Corrales-Medina, Associate Professor of Clinical Pediatrics in the Division of Paediatric Haematology-Oncology at the University of Miami-Miller School of Medicine and Medical Co-Director of the University’s Hemophilia Treatment Centre.

Critical need for a global approach

Dr Corrales-Medina and other international experts on bleeding disorders see a critical need for a global approach to raise VWD awareness:

“Awareness is key for identifying potential patients and for guiding them to the specialists who can provide them with an accurate diagnosis and an appropriate management plan. That is why we’ve come together to establish this initiative, to improve global awareness of VWD”.

Symptoms

VWD is the most common inherited bleeding disorder, affecting up to 1% of the world population. Despite its widespread occurrence, awareness for the disease remains low amongst the general public, and also amongst haematologists and non-haematologist healthcare providers (HCPs). This lack of awareness contributes to over 90% of affected individuals remaining undiagnosed and, consequently, untreated.

Individuals with VWD are prone to excessive and prolonged bleeding, which can be life-threatening in situations such as childbirth, surgery or trauma. Dr Corrales-Medina emphasises the need to identify these patients:

“Most individuals with VWD carry an unnecessarily high burden of the disease for years, due to the lack of timely and accurate diagnosis. They can be exposed to risks associated with the condition, even though effective disease management strategies exist.”

Expanded content and reach

The VWDtest.com website serves as a hub for information, resources and support for both people with bleeding disorders and HCPs.

The new updated and more comprehensive website is available in 14 languages with country-specific content, and has been developed based on feedback from patient organisations and HCPs. First launched in 2019, the original website attracted over 100,000 visitors from 120 countries in just over a year, particularly from Latin America and the Middle East.

Key updates include tailored information for women experiencing heavy menstrual bleeding, parents seeking guidance on unusual bleeding tendencies in their child, or people already diagnosed with VWD. The updated website places particular emphasis on women with VWD, given that 80% of the website visitors were women. A new section is dedicated to non-haematologist HCPs, including gynaecologists/obstetricians, dentists, paediatricians and family practitioners, who may encounter undiagnosed people in their daily practice and therefore play a crucial role in identifying at-risk individuals.

Online assessment tools available

A primary resource on the website is an online version of the well-established Bleeding Assessment Tool (BAT), a questionnaire that helps the user assess their potential for a bleeding disorder. Depending on the results, people are encouraged to seek further medical consultation. Since the initial launch of the website, more than 10,000 BATs have been performed with over 10% of them indicating a potential bleeding disorder, underscoring the value of the tool. The updated resources now include a Pictorial Blood Assessment Chart (PBAC) to help women assess their menstrual blood loss and its potential association with VWD. Region-specific resources, including information on local patient organisations and support groups, have also been added.

The website’s content is guided and overseen by a steering committee of global VWD experts.

Significant impact

Dr Corrales-Medina summarised the website’s significance and its potential for a broad impact on VWD at a global level:

“We are excited to launch this more comprehensive, targeted and region-specific website to enhance the identification of those who can benefit from management of their bleeding disorder. This is particularly an asset in regions of the world with limited access to VWD-specific diagnostic and educational resources. It aims to empower individuals with VWD, allowing them and the medical professionals most likely to encounter them to be better informed and to seek further support and help as needed.”

About von Willebrand disease (VWD)

VWD is the most common hereditary bleeding disorder, with approximately 1% of the population having von Willebrand factor (VWF) levels below normal. The symptoms of VWD include frequent nose bleeds, skin bruises and haematomas, prolonged bleeds from small wounds, bleeding in the mouth, and excessive menstrual bleeding. Gastrointestinal bleeding is a common and sometimes life-threatening problem in VWD patients. Severe deficiency of VWF, or a specific defect in the interaction of VWF with FVIII, causes a secondary moderate deficiency of FVIII. These patients may have symptoms that are more characteristic of haemophilia, such as bleeds into joints or muscles.

About Octapharma

Headquartered in Lachen, Switzerland, Octapharma is one of the largest human protein manufacturers in the world, developing and producing human proteins from human plasma and human cell lines.

Octapharma employs nearly 12,000 people worldwide to support the treatment of patients in 118 countries with products across three therapeutic areas: Immunotherapy, Haematology and Critical Care.

Octapharma has seven R&D sites and five state-of-the-art manufacturing facilities in Austria, France, Germany and Sweden, and operates more than 195 plasma donation centres across Europe and the US. Octapharma has 40 years of experience in patient care.