RESOURCES AND COMMUNITY

Here we hope you will find both inspiration and educational connection to help you face the challenges of living with Type 3/Severe VWD. Some links address VWD specifically, others are geared for the bleeding disorder community in general.
While we are sisters and brothers in many respects, those of us with Type 3/Severe VWD know all too well the hardships that distinguish and differentiate us from all other bleeding disorders.
Let us be respectful of the challenges we all face and mindful of the support we need.
Please let us know if there is a particular resource you have found and would like to share with others.
In that, we all stand to benefit.

RESOURCES AND COMMUNITY

Here we hope you will find both inspiration and educational connection to help you face the challenges of living with Type 3/Severe VWD. Some links address VWD specifically, others are geared for the bleeding disorder community in general.
While we are sisters and brothers in many respects, those of us with Type 3/Severe VWD know all too well the hardships that distinguish and differentiate us from all other bleeding disorders.
Let us be respectful of the challenges we all face and mindful of the support we need.
Please let us know if there is a particular resource you have found and would like to share with others.
In that, we all stand to benefit.
The most challenging symptom
living with Type 3?
42% report joint issues
19% report nosebleeds

– 2017 VWD Connect Foundation Conference Participants

The most challenging symptom living
with Type 3?
42% report joint issues
19% report nosebleeds

– 2017 VWD Connect Foundation Conference Participants

FOUNDATIONS & FRIENDS:

Hemophilia Treatment Center Finder(HTCs)
Bleeding disorders are very complex. These medical centers are often the best choice for a comprehensive, experienced, and caring teams of professionals who can provide immediate care for your bleeding disorder, including Type 3/Severe Von Willebrand Disease.

American Thrombosis & Hemostasis Network
The American Thrombosis and Hemostasis Network (ATHN) is a nonprofit organization dedicated to improving the lives of people affected by bleeding and clotting disorders using technology to secure data, advance knowledge, transform care—and ultimately improve lives.

Foundation for Women & Girls with Blood Disorders
The Foundation is dedicated to achieving correct diagnosis and treatment of blood disorders and accompanying reproductive problems in women and girls.

National Hemophilia Foundation
The National Hemophilia Foundation (NHF) is dedicated to finding better treatments and cures for inheritable bleeding disorders and to preventing the complications of these disorders through education, advocacy and research.

Hemophilia Federation of America
Hemophilia Federation of America (HFA) is a national nonprofit organization that assists and advocates for the bleeding disorders community.

Steps for Living
This website offers a robust menu of information, materials, tools, checklists, interactive games, videos and physical activities for parents raising children with bleeding disorders.

Medic Alert Foundation
This nonprofit membership organization is the leader in medical ID’s and online Emergency Health Records; providing peace of mind when critical information is required most.

Medical and Scientific Advisory Council
This Council was established in 1954 to issue recommendations and advisories on treatment, research and other general health concerns for the bleeding order community.

Patient Services Incorporated
Founded in 1989 PSI is the first non-profit to provide financial support and guidance for qualified patients with specific, rare chronic diseases. Their pioneer model has helped families rediscover hope and health.

Educational Scholarships
Gratefully, we have many in the bleeding disorder community that support our young adults. Foundations, Federations, Industry and Individuals are stepping up in significant ways to make scholarships and higher education affordable and accessible. This is a link to some current listings.

FOUNDATIONS & FRIENDS:

Hemophilia Treatment Center Finder(HTCs)
Bleeding disorders are very complex. These medical centers are often the best choice for a comprehensive, experienced, and caring teams of professionals who can provide immediate care for your bleeding disorder, including Type 3/Severe Von Willebrand Disease.

American Thrombosis & Hemostasis Network
The American Thrombosis and Hemostasis Network (ATHN) is a nonprofit organization dedicated to improving the lives of people affected by bleeding and clotting disorders using technology to secure data, advance knowledge, transform care—and ultimately improve lives.

Foundation for Women & Girls with Blood Disorders
The Foundation is dedicated to achieving correct diagnosis and treatment of blood disorders and accompanying reproductive problems in women and girls.

National Hemophilia Foundation
The National Hemophilia Foundation (NHF) is dedicated to finding better treatments and cures for inheritable bleeding disorders and to preventing the complications of these disorders through education, advocacy and research.

Hemophilia Federation of America
Hemophilia Federation of America (HFA) is a national nonprofit organization that assists and advocates for the bleeding disorders community.

Steps for Living
This website offers a robust menu of information, materials, tools, checklists, interactive games, videos and physical activities for parents raising children with bleeding disorders.

Medic Alert Foundation
This nonprofit membership organization is the leader in medical ID’s and online Emergency Health Records; providing peace of mind when critical information is required most.

Medical and Scientific Advisory Council
This Council was established in 1954 to issue recommendations and advisories on treatment, research and other general health concerns for the bleeding order community.

Patient Services Incorporated
Founded in 1989 PSI is the first non-profit to provide financial support and guidance for qualified patients with specific, rare chronic diseases. Their pioneer model has helped families rediscover hope and health.

Educational Scholarships
Gratefully, we have many in the bleeding disorder community that support our young adults. Foundations, Federations, Industry and Individuals are stepping up in significant ways to make scholarships and higher education affordable and accessible. This is a link to some current listings.

“As someone who has suffered with this rare and not well-diagnosed disease my whole life, VWD Connect is a much needed support and outreach organization that has allowed me to connect with others on a national level, explore the latest research, and learn about daily treatment options…not to mention the tremendous support group that’s out there for myself and my family.”
-Shab S. Poloz

APPS, ARTICLES AND RESOURCES:

Blood Sisterhood App
This robust app is free and has been designed specifically for women with bleeding disorders. It has loads of features to help women log symptoms, menstrual cycles, share information with providers, and record treatments. Available for iPhone and Android it will provide women and girls significant peace of mind and reassuring way to manage their menstrual bleeds.

A Sample Travel Letter
Don’t leave home without this important communication (or a version of it) created by Steps for Living. When traveling with a clotting factor, a letter explaining a brief description of your condition and the need for medication is a must. Here is a sample worth tailoring for your specific needs.

Playing it Safe
Written by experts in the field of bleeding disorders this book is dedicated to encouraging and coaching healthy activities. For those with Type 3/Severe Von Willebrand Disease it will give you courage to step out and try new things and give you confidence to support your dreams for physical fitness. It will give parents hope and offer tips for providing safety for kids growing up with VWD; encouraging the best for motion and agility.

Family Emergency Checklist
The CDC has a preparedness checklist for families during times of disaster. For those with bleeding disorders it is especially critical to have another layer of plans in place. Here is your guide for doing so effectively and with confidence.

100 Questions & Answers About Von Willebrand Disease
Originally released in 2008 this primer on Von Willebrand Disease still has staying power. Written from both patient’s and doctor’s views it is a practical yet easy to understand overview, even if it does not go into great detail about many issues confronted by those with Type3/Severe Von Willebrand Disease. Available on Amazon.

Tips To Take To School
Jeanette Cesta, Founder of VWD Connect Foundation knows a bit about VWD. She is an educator, trainer and has raised three children with the disease. This read for parents is an insightful way to help parents and kids with VWD muscle through the realities of today’s classroom.

Important Report from Strategic Summit on Von Willebrand Disease
An overview of presentations and discussion conducted at the Strategic Summit on Von Willebrand Disease held in November of 2014 in Washington, D.C. Comprehensive and informative.

APPS, ARTICLES AND RESOURCES:

Blood Sisterhood App
This robust app is free and has been designed specifically for women with bleeding disorders. It has loads of features to help women log symptoms, menstrual cycles, share information with providers, and record treatments. Available for iPhone and Android it will provide women and girls significant peace of mind and reassuring way to manage their menstrual bleeds.

A Sample Travel Letter
Don’t leave home without this important communication (or a version of it) created by Steps for Living. When traveling with a clotting factor, a letter explaining a brief description of your condition and the need for medication is a must. Here is a sample worth tailoring for your specific needs.

Playing it Safe
Written by experts in the field of bleeding disorders this book is dedicated to encouraging and coaching healthy activities. For those with Type 3/Severe Von Willebrand Disease it will give you courage to step out and try new things and give you confidence to support your dreams for physical fitness. It will give parents hope and offer tips for providing safety for kids growing up with VWD; encouraging the best for motion and agility.


Family Emergency Checklist
The CDC has a preparedness checklist for families during times of disaster. For those with bleeding disorders it is especially critical to have another layer of plans in place. Here is your guide for doing so effectively and with confidence.

100 Questions & Answers About Von Willebrand Disease
Originally released in 2008 this primer on Von Willebrand Disease still has staying power. Written from both patient’s and doctor’s views it is a practical yet easy to understand overview, even if it does not go into great detail about many issues confronted by those with Type3/Severe Von Willebrand Disease. Available on Amazon.

Tips To Take To School
Jeanette Cesta, Founder of VWD Connect Foundation knows a bit about VWD. She is an educator, trainer and has raised three children with the disease. This read for parents is an insightful way to help parents and kids with VWD muscle through the realities of today’s classroom.

Important Report from Strategic Summit on Von Willebrand Disease
An overview of presentations and discussion conducted at the Strategic Summit on Von Willebrand Disease held in November of 2014 in Washington, D.C. Comprehensive and informative.