RESOURCES

Welcome to our Resource Room!

Here you will find articles and educational handouts that may help you in facing the challenges of living with Type 3 VWD. Some will address VWD specifically, others are geared for the whole bleeding disorder community.

We are working with the bleeding disorder community’s national organizations to make sure that the incredible resources and information they have is readily available to you. We have included a section here to list some of our community’s national organizations websites that you may want to visit. Many of these sites contain information that addresses questions and concerns you may have. We would like to thank the following organizations for their help in providing resource materials:

National Hemophilia Foundation
Hemophilia Federation of America
American Thrombosis and Hemostasis Network
Foundation for Women and Girls with Blood Disorders
LA Kelley Communications, Inc.

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

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.

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.

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.

MASAC (Medical and Scientific Advisory Council)
Issues recommendations and advisories on treatment, research and other general health concerns for the bleeding disorders community:

Summary Report from the 2014 NHF VWD Summit  (PDF)
The National Hemophilia Foundation Von Willebrand Disease Summit Report

Search for Hemophilia Treatment Center
CDC Search Tool

Steps for Living
Information about living with a bleeding disorders throughout different life stages

Medic Alert Foundation (medical jewelry)

 

APPS:
Blood Sisterhood App
Designed specifically for women with bleeding disorders: track monthly menstrual cycle, log symptoms, record type of treatment used, period reminder alert and more.

MicroHealth App
Track daily events using your phone. Log and get reminders for prophy, infusions, bleeds and skipped day episodes.

 

ARTICLES & DOCUMENTS:
Travel Letter (PDF)
A sample travel letter format from NHF

Playing it Safe (PDF)
Information for playing it safe with a bleeding disorder from NHF

Family Emergency Plan (PDF)
Information about an emergency plan for your family from NHF

PULSE 2017 Community Forum on The Affordable Care Act (PDF)
Thoughts on the Affordable Care Act and its possible revision or repeal. Bob Graham gives us a community advocate’s perspective. Joy Fitzgerald offers her family’s experiences with the ACA. James Romano responds from a payer’s point of view.

PULSE 2017 Get Out Of Jail Free by Ian Thomas (PDF)
Read Ian’s story about insurance and medical documents so you can make sure his situation doesn’t happen to you.

PULSE 2017 Ask the Expert by Michelle Rice, SVP of External Affairs, National Hemophilia Foundation (PDF)
Michelle’s clear explanation of three questions that many families have regarding medical and pharmacy costs are helpful for all.

PULSE 2017 Murky Waters: Dealing With Uncertainty In Healthcare by Michael Bradley (PDF)
A story, a quick quiz, some definitions all lead to helping you understand your insurance just a little better.

PULSE 2017 Empower The Girl, Empower the Woman by Wendy E. Owens (PDF)
Questions and Answers about the Affordable Care Act, Genetic Testing, Insurance, and Privacy.

International Study Group Findings Suggest Prophylaxis Could Reduce Hospitalizations for VWD Patients

 

EDUCATIONAL ASSISTANCE:
Patient Services Incorporated (PSI)
A non profit patient assistance organization that provides financial support and guidance for qualified patients with specific, rare chronic diseases. Through PSI assistance programs patients and their families rediscover hope and health.

Educational Scholarships Listing
Listing of educational scholarship opportunities for the bleeding disorder community.