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.

Who can get VWD?

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.

Is there a cure?

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.

How does it affect your life?

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.

Who can get VWD?

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.

Is there a cure?

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.

How does it affect your life?

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 2021 Conference August 13th – 16th will be VIRTUAL – but no less vibrant than it has been the last 4 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 through the generosity of our Platinum Sponsor, Octapharma USA. Our sincere thanks to CSL Behring for being a Silver Sponsor.

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 2021 Conference August 13th – 16th will be VIRTUAL – but no less vibrant than it has been the last 4 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 through the generosity of our Platinum Sponsor, Octapharma USA. Our sincere thanks to CSL Behring for being a Silver Sponsor.

Save the Date!
August 13 - 16, 2021.
Details coming soon.

MEET

If you are curious in learning how and why people find themselves part of VWD Connect Foundation even when they do not have Type 3/Severe Von Willebrand Disease, this featured Spotlight will give you insights.

Nancy Foti’s story begins as a high school student looking for a volunteer opportunity to enhance her resumé for college applications. It started innocuously: stuffing envelopes and packing gift bags for “Making the Connection”. This was the first national Type 3/ Von Willebrand Disease Conference ever to be held in the United States. This was early 2017; before VWD Connect Foundation was formally established. A lifetime ago!

Today, she is an indispensable member of VWD Connect Youth Staff. Her story line speaks to how finding engagement, understanding and connection to this rare disease can be transformational to finding purpose.

If you are curious in learning how and why people find themselves part of VWD Connect Foundation even when they do not have Type 3/Severe Von Willebrand Disease, this featured Spotlight will give you insights.

Nancy Foti’s story begins as a high school student looking for a volunteer opportunity to enhance her resumé for college applications. It started innocuously: stuffing envelopes and packing gift bags for “Making the Connection”. This was the first national Type 3/ Von Willebrand Disease Conference ever to be held in the United States. This was early 2017; before VWD Connect Foundation was formally established. A lifetime ago!

Today, she is an indispensable member of VWD Connect Youth Staff. Her story line speaks to how finding engagement, understanding and connection to this rare disease can be transformational to finding purpose.

 

“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.