EXPLORE

What It Means To Have Type 3/Severe Von Willebrand Disease

Von Willebrand Disease is a lifelong hereditary bleeding disorder where blood does not clot well. People with the disease have either low levels of Von Willebrand Factor, a protein necessary to form a blood to clot, or their Von Willebrand Factor does not work properly.

FIND OUT MORE

Most people are born with the disease or have inherited it from one or both parents. Sometimes warning signs such as heavy bleeding from a fall or nosebleed may not show up for a year or more.

There is no cure but creating the juggernaut for finding one is being put in place by VWD Connect Foundation as these words are being written.

Those with Type 3/Severe Von Willebrand Disease belong to a rarified community who can experience spontaneous, life-threatening bleeds.

The lives of these men, women, young adults and children are upended and constantly challenged by the sheer unpredictability of this bleeding disorder.

EXPLORE

What It Means To Have Type 3/Severe Von Willebrand Disease

Von Willebrand Disease is a lifelong hereditary bleeding disorder where blood does not clot well. People with the disease have either low levels of Von Willebrand Factor, a protein necessary to form a blood to clot, or their Von Willebrand Factor does not work properly.

FIND OUT MORE

Most people are born with the disease or have inherited it from one or both parents. Sometimes warning signs such as heavy bleeding from a fall or nosebleed may not show up for a year or more.

There is no cure but creating the juggernaut for finding one is being put in place by VWD Connect Foundation as these words are being written.

Those with Type 3/Severe Von Willebrand Disease belong to a rarified community who can experience spontaneous, life-threatening bleeds.

The lives of these men, women, young adults and children are upended and constantly challenged by the sheer unpredictability of this bleeding disorder.

LEARN

How this Foundation supports those with Type 3/Severe Von Willebrand Disease - through robust education, events and conferences

This year, because of COVID, the 2020 Conference November 13th – 16th will be VIRTUAL – but no less vibrant than it has been the last 3 years. COVID may keep us away but cannot keep us apart. The fact is, our national conference is the only place where people of all ages with Type 3/Severe VWD gather to share insights, experiences and personal perspectives while learning about exceptional medical and support resources for their chronic disease.

This Conference is made possible in part through a grant from CSL Behring. Our sincere thanks to Grifols for their generous support.

LEARN

How this Foundation supports those with Type 3/Severe Von Willebrand Disease - through robust education, events and conferences

This year, because of COVID, the 2020 Conference November 13th – 16th will be VIRTUAL – but no less vibrant than it has been the last 3 years. COVID may keep us away but cannot keep us apart. The fact is, our national conference is the only place where people of all ages with Type 3/Severe VWD gather to share insights, experiences and personal perspectives while learning about exceptional medical and support resources for their chronic disease.

This Conference is made possible in part through a grant from CSL Behring. Our sincere thanks to Grifols for their generous support.

If you are interested in learning about someone who experiences a full daily life with Type 3/Severe Von Willebrand Disease this featured Spotlight will give you keen insights. Cody’s childhood, adolescence and ultimate perseverance to get a college degree have been shaped and informed by VWD. His story is one of triumph over challenge.

Cody Kester has Type 3/Severe Von Willebrand Disease. He is four months into his job as a volunteer fireman for hometown Alma, Arkansas and neighboring communities. At 6’4” and 400 lbs., and an admittedly large “squash”, his Chief had challenges finding the right gear as Kester set out to fulfill his 160 hours of classroom training before being deployed on his first on-call emergency. But the fates have a sense of humor.

If you are interested in learning about someone who experiences a full daily life with Type 3/Severe Von Willebrand Disease this featured Spotlight will give you keen insights. Cody’s childhood, adolescence and ultimate perseverance to get a college degree have been shaped and informed by VWD. His story is one of triumph over challenge.

Cody Kester has Type 3/Severe Von Willebrand Disease. He is four months into his job as a volunteer fireman for hometown Alma, Arkansas and neighboring communities. At 6’4” and 400 lbs., and an admittedly large “squash”, his Chief had challenges finding the right gear as Kester set out to fulfill his 160 hours of classroom training before being deployed on his first on-call emergency. But the fates have a sense of humor.

“This experience was beyond our wildest dreams. We met some wonderful people and have so many answers to so many questions. Until the first day of the conference we had never met someone with Von Willebrand, let alone Type 3. Thanks to your conference I feel like a better parent and I have found a new support system. Thank you for making our lives better.”
-Gregory Baca, Marne Baca, and Jaeden Kiley
“This experience was beyond our wildest dreams. We met some wonderful people and have so many answers to so many questions. Until the first day of the conference we had never met someone with Von Willebrand, let alone Type 3. Thanks to your conference I feel like a better parent and I have found a new support system. Thank you for making our lives better.”
-Gregory Baca, Marne Baca, and Jaeden Kiley
Only 1 out of 1 million are likely to be diagnosed with Type 3/Severe Von Willebrand Disease
VWD  Connect Foundation thanks

for its generous support of our activities.

KNOW

How Support to VWD Connect Foundation Matters

Today we are a are a tightly orchestrated, patient-centric organization poised to shine a light on a little known and even less understood disease.

When only 1 out of 1 million are likely to be diagnosed with Type 3/Severe Von Willebrand Disease it is easy to become an afterthought in the bleeding disorder community.

We are connected by links to organizations in the world of hemophilia and brothers and sisters with bleeding disorders. Yet those with Type 3/Severe VWD know all too well the world they live in is distinctly unique and always unpredictable.

Donate to VWD Connect Foundation and help fund on-going programs of patient education, access to progressive treatments and vital research. And ultimately, the promise of a more predictable quality of life.

KNOW

How Support to VWD Connect Foundation Matters

Today we are a are a tightly orchestrated, patient-centric organization poised to shine a light on a little known and even less understood disease.

When only 1 out of 1 million are likely to be diagnosed with Type 3/Severe Von Willebrand Disease it is easy to become an afterthought in the bleeding disorder community.

We are connected by links to organizations in the world of hemophilia and brothers and sisters with bleeding disorders. Yet those with Type 3/Severe VWD know all too well the world they live in is distinctly unique and always unpredictable.

Donate to VWD Connect Foundation and help fund on-going programs of patient education, access to progressive treatments and vital research. And ultimately, the promise of a more predictable quality of life.

Only 1 out of 1 million are likely to be diagnosed with Type 3/Severe Von Willebrand Disease
VWD  Connect Foundation thanks

for its generous support of our activities.