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.
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.
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
Our 2023 U.S. National Type 3/Severe Von Willebrand Disease Conference will be held July 21-24, 2023 at the West Palm Beach Marriott in Florida.
We are so excited to announce that this year we will also be hosting our very first International Patient Conference- happening July 23-25, 2023.
Our U.S. National Conference has been 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 year, we are so proud to be able to offer the same for people with severe VWD around the world!
Please visit the 2022 Conference Event page for pictures from last year’s conference. For more information on our upcoming conferences, please click below:
2023 U.S. National Patient Conference
2023 International Patient Conference
LEARN
How this Foundation supports those with Type 3/Severe Von Willebrand Disease - through robust education, events and conferences
Our 2023 U.S. National Type 3/Severe Von Willebrand Disease Conference will be held July 21-24, 2023 at the West Palm Beach Marriott in Florida.
We are so excited to announce that this year we will also be hosting our very first International Patient Conference- happening July 23-25, 2023.
Our U.S. National Conference has been 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 year, we are so proud to be able to offer the same for people with severe VWD around the world!
Please visit the 2022 Conference Event page for pictures from last year’s conference. For more information on our upcoming conferences, please click below:
2023 U.S. National Patient Conference
2023 International Patient Conference
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.
Kari Gregory is a mother of three children and an attorney in the San Francisco Bay Area. Her oldest child, Kayla, was diagnosed with Type 3 VWD after she woke up with spontaneous bruising on her legs and feet at six weeks of age.
As part of her daughter’s diagnosis, Kari learned that she and her husband, Chris, both had Type 1 VWD. With her diagnosis, Kari realized that she had many of the common bleeding symptoms, like easy bruising and heavy menstrual cycles.
This is a story about a mother and daughter sharing and being connected on a parallel journey. It chronicles a mother in search of information, options, support and education. It is also a story about empowerment, advocacy and hope.
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.
Kari Gregory is a mother of three children and an attorney in the San Francisco Bay Area. Her oldest child, Kayla, was diagnosed with Type 3 VWD after she woke up with spontaneous bruising on her legs and feet at six weeks of age.
As part of her daughter’s diagnosis, Kari learned that she and her husband, Chris, both had Type 1 VWD. With her diagnosis, Kari realized that she had many of the common bleeding symptoms, like easy bruising and heavy menstrual cycles.
This is a story about a mother and daughter sharing and being connected on a parallel journey. It chronicles a mother in search of information, options, support and education. It is also a story about empowerment, advocacy and hope.
“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
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.