Have you checked out Victory for Women’s Resource tab? This section of the website highlights some of the amazing educational resources that NBDF has to offer, from Steps for Living to Better You Know.
Steps for Living is a great starting point to learn about a variety of topics about bleeding disorders. The website is broken down into age ranges to help you better navigate the content. The content is then subdivided into themes such as, “The Basics of Bleeding Disorders,” “School,” or “Treatment.” This website is such a great resource for newly diagnosed families that are starting to learn about bleeding disorders or are still getting accustomed to bleeding disorder lingo. But the website is equally beneficial for families who have been in this community for years. Some of our more advanced content delves into newer treatment options and answers common questions around insurance. An important thing to note is that scattered across the website are downloadable and printable PDFs, so take your time browsing through those pages and print out any resource that may be of use to you. Lastly, we are updating the website and launching brand new content, so look forward to what Steps for Living has to offer in 2024!
Better You Know is a campaign is for women, girls, and people with the potential to menstruate who may experience symptoms of a bleeding disorder but have not yet been diagnosed. The goal of this program is to spread awareness on signs and symptoms of a bleeding disorder, so more undiagnosed community members can get the diagnosis they deserve. The website contains a validated risk assessment tool as well as various downloadable and printable PDF resources to assist you as you seek out a diagnosis.
The BYK campaign also introduced the Journey to Know program last year that was designed to be additional support along your journey towards a diagnosis. By signing up for the program, you will receive access to a series of eight educational videos as well as email/SMS weekly check ins that will guide you through your journey. Seeking out a bleeding disorder diagnosis can feel daunting, but we’re hoping by joining Journey to Know, you’ll feel a little less alone and a little better supported. Journey to Know will be launching in Spanish in 2024, so stay tuned!
Lastly, I wanted to highlight our NBDF publication webpage that allows you to filter through resources by topic and audience. Of the resources for women, girls, and people with the potential to menstruate, the “Time to Talk Puberty: A Guide for Girls with Bleeding Disorders” provides parents and caregivers with tips on how to talk about puberty and periods with your children. There is also a VWD Toolkit tailored for women, girls and people with the potential to menstruate that provides a quick overview of key resources.
I hope you find these resources to be helpful, and I encourage you to share these links with anyone else who may benefit from them. Happy reading!
