Women with Bleeding Disorders
NBDF is committed to improving the health outcomes for WGPPM with bleeding disorders. Our WGPPM initiatives goals are:
- to increase awareness of WPGGM’s bleeding disorders so that they receive early, accurate diagnoses, leading to better health outcomes.
- to provide WGPPM affected by bleeding disorders with the education, support, skills, and resources they need to advocate for their healthcare, financial, and social support needs.
- to collaborate with WGPPM, other organizations, health care providers, and other partners to improve overall health outcomes.
Here is more information on our WGPPM Initiatives and Offerings
True to our mission of health equity and inclusion, NBDF hosted a WGPPM Summit in May 2023 to work towards better healthcare outcomes for WGPPM. The Summit shined a light on the diagnosis, access, and treatment barriers WGPPM face and prioritized and mapped out steps towards improving treatment and care.
Out of the Summit, NBDF developed this white paper “Improving outcomes for women, girls and people who have or had the potential to menstruate (WGPPM): a roadmap for moving forward.” We invite YOU to review and give your thoughts and feedback by filling out this form during our Open Comment Period.
Over 50 people attended representing a wide range of stakeholders including:
- WGPPM living with a bleeding disorder, caregivers and family members (Lived Experience Experts – LEEs)
- Health Care Providers (HCPs) including obstetrician-gynecologists (OB/GYN), hematologists, nurses, physical therapists, and social workers
- Regional Administrators
- NBDF chapter representatives
- NBDF partner organizations
- Pharmaceutical company partners
- Representatives from the Centers for Disease Control and Prevention (CDC) and health policy lobbying groups
NBDF worked to intentionally invite stakeholders to reflect the varied backgrounds, experiences, and professions. NBDF wanted to ensure LEEs ranged in age, bleeding disorder diagnosis and experiences, race and ethnicity, gender identity, and primary language spoken. Similarly, NBDF invited a range of health care providers and national organizations, some with a focus on WGPPM-related research and others with a parallel interest in hematology. The aim was to identify barriers and opportunities for better collaboration. Ideally, NBDF would have invited many more voices to the table if space had been unlimited. This is why NBDF invites you to participate now by reviewing the white paper and giving your feedback.
The WGPPM Summit and this White Paper were made possible through the support of Genentech, Novo Nordisk, Pfizer, Sanofi, and Takeda. These companies were invited to send a representative to participate.
Hear directly from our Lived Experience Experts on their journey as WGPPM with a bleeding disorder.
Check out these resources shared at the WGPPM Summit.
Better You Know campaign targets undiagnosed WGPPM and their healthcare providers to get them on the path to diagnosis, treatment, and care.
You can find a bleeding disorders risk self-assessment tool, resources for navigating the diagnosis process and more at betteryouknow.org.
NBDF offers educational programming and publications for women and girls with bleeding disorders as part of the Victory for Women program. Victoryforwomen.org celebrates the voices of WGPPM in the bleeding disorders community. It’s a place for you to share your creative expression of all kinds: photography, blog posts, stories, poems…whatever you feel captures you. A place where women in the community can express themselves, ask their questions, share their challenges, and above all, celebrate the victory of standing up and being heard.
If you have questions, please reach out to firstname.lastname@example.org.
In collaboration with our chapter and HTC network we offer WGPPM of all ages. Workshop topics include self-advocacy, communication strategies, resiliency, puberty, self- esteem, navigating emotions, and bleeding disorders among women. Workshops can be delivered in person and virtually upon request from chapter or HTC staff.
NBDF's online education provides free on-demand quality education on issues that matter to all members of the bleeding disorders community. These webinars and webcasts bring the experience of expert health care providers and your peers directly to you. Watch the most recent webinars for WGPPM with bleeding disorders or browse the complete listing.
Stay informed with the latest updates for the inheritable blood disorders community.
NHF has numerous publications, brochures, and tools for women available here for download.
* NBDF uses the term Women, Girls, and People who have or had the Potential to Menstruate (WGPPM) to be inclusive of the needs and experiences of gender diverse people who were assigned female at birth, and those who now identify as a woman or a girl . While the term WGPPM is framed around menstruation, not all currently menstruate. Regardless of gender identity, some people have had hysterectomies, others have their periods suppressed or ended from hormone therapy, and others have gone through menopause. It is the “potential” that is the unifying element in this term, as some may never have started their periods in the first place. In addition, NBDF wants to acknowledge that bleeding for WGPPM is not just about heavy menstrual bleeding. Addressing other types of bleeding is critical for overall improved health outcomes.
Thank you to our 2023 Supporters