Cat has type 2B VWD and is a mum to two daughters with the same diagnosis, with VWD running in her family. Drawing on her experience in cardiovascular research and her work as a medical affairs consultant in biotech, Cat is understandably passionate about providing the VWD community with the most up-to-date and reliable scientific information, including new publications, treatment updates, and ongoing clinical trials.

Since becoming a parent, Cat has become increasingly involved in VWD patient advocacy, witnessing firsthand the lack of awareness of VWD in healthcare settings, and the importance of providing education and support to other families and caregivers navigating their own VWD journeys.

Quote from Cat: “Knowledge is power – the more informed we are about VWD as individuals, the more we can advocate, support and empower others in the global VWD community. My goal is to help create lasting change so that future generations live in a world that knows about VWD.”

Emma is diagnosed with type 2A VWD. She is from a large family of “bleeders”, but her path to diagnosis was not straightforward. Misconceptions surrounding VWD inheritance and presentation meant she was nearly a year old before her condition was formally recognised. Emma’s childhood was marked by traumatic experiences and often long delays in treatment due to misunderstandings from medical teams.

Yet Emma has turned these challenges into a source of strength and resilience. Inspired by the nurses who have cared for her, she pursued a career in healthcare and now is an experienced ICU nurse. Her professional journey reflects her determination to ensure others receive dignified care, empathy, and understanding she longed for.

Emma is passionate about self-advocacy. After years of struggling with needle phobia, she has overcome this obstacle and now confidently self-injects prophylaxis and on-demand treatment. Her story is a powerful example of courage and perseverance.

Emma is committed to changing the future of VWD through improving education, building a supportive community, and enhancing the quality of life of individuals with VWD as well as the carers that support them. She has previously participated in research studies and spoken at VWD and women’s events. Emma’s voice is a reminder that sharing experiences can drive progress, inspire others, and shape the future of VWD. Her vision is not only about advocacy but also about creating a community of hope, understanding, and empowerment.

Quote from Emma: “Don’t bleed your way into treatment. Treat for quality of life, not just reactive care. Advocate for yourself and demand understanding. Speak out and share your experiences. Together our collective voice can shape the future of VWD, ensuring better care, greater awareness and hope for generations to come.”

Sunny Maini lives with severe von Willebrand Disease (VWD) Type 3 and has spent his life navigating a condition that is still widely misunderstood. After building businesses across multiple industries and serving as the Executive Chairman for VWD at the European Haemophilia Consortium, Sunny saw a critical gap: no organisation is fully dedicated to VWD alone. The VWD Alliance was created to change this.

Drawing on his background in building companies, networks, and strategic systems, Sunny and the team are developing a central tech-driven platform to connect patients, families, clinicians, and partners worldwide. His goal is simple: end the isolation he experienced growing up, accelerate diagnosis, and give VWD patients a unified voice strong enough to drive better care, better understanding, and better therapies.

Quote from Sunny: “Education is the most powerful weapon we have — and with it, I believe we can build a future where VWD is finally taken seriously. A future where every bleed matters, every patient is heard, and the invisible becomes impossible to ignore.”

Debbie’s journey with Type 1 von Willebrand Disease (VWD) is both deeply personal and a driving force behind her advocacy. For years, she experienced classic symptoms like heavy periods and excessive bruising, often being told that she simply had to endure them as there was “nothing that could be done.”

The diagnosis of VWD came after Debbie had already had her three children. This revelation was profound, as it suddenly provided a clear explanation for decades of previously confusing symptoms experienced throughout her teen and adult life.

The hereditary nature of VWD is central to Debbie’s perspective: two of her three children also live with Type 1 VWD. This reality fuels her dedication to ensuring that future generations do not encounter the same lack of understanding and support that she did.

Debbie is committed to the urgent need for greater awareness and knowledge about VWD among healthcare providers and the general public. To further this mission, she serves as a dedicated Trustee of the VWD Alliance, striving to enhance education, support, and timely diagnosis for all individuals affected by this common, yet frequently misunderstood, bleeding disorder.

Quote from Debbie: “I was diagnosed with von Willebrand Disease after my son’s diagnosis, after spending years being told my symptoms were ‘normal.’ Now, I’m on a mission to raise awareness so that my children, and future generations, won’t have to face the same challenges in silence.”

For many years, Sonia lived with often debilitating bleeding symptoms. Despite repeated episodes that affected her daily life, and having a strong family history of VWD, Sonia lacked support from her GP. It wasn’t until a traumatic bleeding event in 2021 that she finally received an official diagnosis of Type 2A VWD — a moment that brought both clarity and a renewed sense of purpose.

Empowered by this understanding of her condition, Sonia channelled her experience into advocacy. She became a trustee of the VWD Alliance, where she works to amplify awareness, improve education, and support others navigating the complexities of bleeding disorders.

Quote from Sonia: “I am committed to ensuring that no one living with VWD feels unheard, misunderstood, or alone, and I am proud to use our voice at the VWD Alliance to push for earlier diagnosis, better recognition in healthcare settings, and compassionate support for all affected.”

Cassie has Type 1 VWD, and her daughter has severe Type 3 VWD. Being a parent carer can be extremely challenging and at times very lonely. This has led to Cassie’s undeniable determination to be as up-to-date and knowledgeable about the disease as possible.

Together, with Cassie and her daughter’s lived experience with VWD, she hopes to be able to share her own conversations in order to help others going through the same challenges she has had to overcome, and build a brighter future for all living with VWD.

Quote from Cassie: “Let’s change the narrative post-diagnosis, and let patients know that there can be support instead of silence. As a community, let’s help each other navigate this journey. It may not be the life we imagined, but together we don’t need to face VWD alone.”

Meet Amy — a hematology-oncology nurse with over 20 years of experience and a passionate advocate for her husband and daughter, both living with von Willebrand Disease (VWD). After her family faced traumatic, unexpected complications following surgery, Amy turned her voice toward raising awareness, sharing their story, and supporting others in the bleeding disorders community.

For Amy, the VWD Alliance is more than a community — it’s a movement for education, support, and lasting change in care.

Kim is a dedicated advocate within the VWD community and a parent to a child living with severe Type 1 von Willebrand disease (VWD). Through her family’s diagnostic journey, Kim has experienced firsthand the challenges of delayed recognition, medical gaslighting, and the need for stronger education and support within healthcare systems.

Drawing on her work in patient outreach and community education, Kim is passionate about amplifying patient and caregiver voices, improving awareness of bleeding disorders, and helping families feel informed, heard, and empowered. Her advocacy focuses on early diagnosis, navigating school and medical systems, and creating accessible resources that meet families where they are.

As a member of the VWD Alliance team, Kim is committed to fostering connection, sharing practical knowledge, and ensuring that no family feels alone while navigating VWD.

Quote from Kim: “Awareness changes outcomes. When families are informed and supported, they can better advocate — not just for themselves, but for the next generation.”

Brandee is a patient advocate, community builder, and lifelong patient living with severe von Willebrand Disease (VWD). With over 25 years of personal experience, Brandee was diagnosed at the age of 12 after months of uncontrolled bleeding. Like many women, she quickly learned just how difficult it is to be heard, understood, and taken seriously in the US healthcare system. Those early years of trial-and-error with medications, dismissed symptoms, and limited support fuelled Brandee’s passion for advocacy and helping others feel less alone in their journey.

Throughout the years, Brandee has transformed those challenges into purpose. She co-founded a non-profit organization with her best friend, a fellow patient, to empower and support people living with bleeding disorders throughout the United States.

Additionally, Brandee co-created Sisterhood for Women Who Bleed, a community where women can share their experiences, ask questions, learn from one another, and raise awareness together. Through this platform, she collaborates with pharmaceutical partners and community organizations to enhance education and highlight the lived experiences of women.

One of the most important lessons from Brandee’s journey is the value of finding your community. Living with a bleeding disorder can feel isolating, but connecting with others who truly understand can make a significant difference. The community she has found — women who share similar struggles, victories, and stories — has been transformative. It’s Brandee’s mission to help others discover that same sense of belonging and support.

Today, Brandee serves on multiple patient advisory boards and contributes to national initiatives aimed at improving care and education for individuals with VWD and other bleeding disorders. Whether she is speaking with clinicians, guiding newly diagnosed patients, or building community through her non-profit, Brandee’s goal is to ensure that women feel seen, heard, and empowered to advocate for themselves.

Quote from Brandee: “Live your story. Find your people. Both can change your life.”

Michelle is one of seven members of her immediate family living with von Willebrand Disease (VWD) Type 1, and she has long championed equitable access to education, care, and treatment.

Raised in Wisconsin and now living in Michigan, Michelle pairs lived experience with formal training, holding an MPA and a BA. She has served in multiple advocacy roles with the Hemophilia Federation of America (HFA), received the World Federation of Hemophilia (WFH) Susan Skinner Memorial Fund Scholarship, and is an alumna of the National Bleeding Disorders Foundation (NBDF) National Youth Leadership Institute.

Quote from Michelle: “90% of people living with VWD are undiagnosed. I am fervently passionate about making sure all living with VWD someday have an accurate diagnosis and access to care.”

I have been a part of the bleeding disorder community since I was a young child. I attended health fairs with my mom, who would set up booths to educate the general public about bleeding disorders. Advocacy was something taught to me as a necessity at a young age, fighting for recognition as a family with mild VWD.

I went to a camp for kids with bleeding disorders every summer growing up and it helped shape who I am today, which is why summer camps are a large focus for me in this realm to this day. I want to give back to the part of the community that had the largest impact on me.

I now have a daughter with VWD and I am learning to navigate what it is like to raise a child with a bleeding disorder and teaching her the same valuable lessons on recognition and advocacy that I was taught.