Connections, community and von Willebrand disease
By Kathryn Jenner
Recently, members of the Haemnet team took part in a collaborative event for the von Willebrand disease community, along with Barts Health NHS Trust/Royal London Hospital and The Haemophilia Society.
The aim of the ‘VWD: Understanding and Thriving’ event was to share information about new treatments for von Willebrand’s – and also to provide an opportunity for people with von Willebrand’s to connect with each other.
VWD Alliance: “Voice for the voiceless”
The event included the launch of a new platform for people von Willebrand’s. Current chairwoman Dr Cat Wilder introduced the VWD Alliance, whose aim is to provide a “voice for the voiceless” and address the needs and challenges faced by everyone with von Willebrand disease.
The VWD Alliance recognises the diversity in the von Willebrand disease community and the power of shared experience and understanding. It plans to host events focused on advocacy, and to serve as a hub for real-life advice and learning, working in collaboration with other organisations.
Working together for the future
Haemnet is partnering with the VWD Alliance and supports its aspiration to work collaboratively to change the von Willebrand’s landscape for the better.
“It’s all about enhancing the efforts that are already being made and making them reach further,” says Sunny Maini, Haemnet’s Director of Corporate Strategy, who has Type 3 von Willebrand disease. “There’s so much to be done in the von Willebrand’s space and I think the VWD Alliance can fill a gap.”
Thriving through understanding
The lack of knowledge and understanding about von Willebrand disease – the most common inherited bleeding disorder – is an issue we often hear about. People attending the event said they want this to change. A strong sense of community driven by hope and courage plays an important part here, alongside collaborative efforts to raise awareness.
“We need to work together to alleviate any suffering among people with von Willebrand disease and provide a supportive community,” says Sunny. “We all need to stand up to make that change.”
To find out more about the VWD Alliance, sign up for information at www.vwdalliance.co.uk