As we raise awareness for women, girls, and those assigned female at birth with bleeding disorders, the lack of access to diagnosis, treatment, and care, or the stigma of being known as only a carrier and not being recognized as having a bleeding disorder can be overwhelming. We see the struggles women are facing and we want to raise our voices in frustration at the lack of movement for health equity for women. Yet at the same time, there are organizations that taking positive steps to raise awareness and support women with bleeding disorders. This report recognizes this work.
FAIR Time for Women Coalition reaches out to the bleeding disorder community regularly to encourage groups to share their achievements in providing tools, programs, and events for women with bleeding disorders with us so we can showcase new efforts to support, educate and advocate on the needs of female bleeders.
Below is our 2023 compilation.
If you know of a resource or event that took place in 2023 that should be included, please submit below.
* Existing or new websites with updated information for women.
Bayer – Joint Range of Motion Findings Amongst Female Patients Poster
Believe Ltd – Flow: Straight Talk About Periods Video
BioMatrix – Time to Rethink Women with Bleeding Disorders: Stop the Unnecessary Suffering! Article
Black Women’s Health Imperative – Positive Periods
CHES Foundation’s SHEmophilia Scholarly Research
FAIR Time for Women Coalition – Diagnosis, Care & Treatment Toolkit
FAIR Time for Women Coalition – Research Articles Library
Foundation for Women and Girls with Blood Disorders Research Library
National Bleeding Disorders Foundation – WGPPM White Paper
National Bleeding Disorders Foundation – Women and Bleeding Disorders Webpage
Octapharma – Health Screening Considerations for Women with a Bleeding Disorder
Octapharma – Renée Paper: Crusader for Women with Von Willebrand Disease
Octapharma – The Facts About Women and Bleeding Disorders
The Coalition for Hemophilia B – Education Hub
The Coalition for Hemophilia B – Hemophilia B Quarterly News Publication
* Existing and new programs with updated information for women.
CHES Foundation – Hermanas de Sangre
CHES Foundation – Hermanas de Sangre Virtual Meetings and Educational Zoom Events
CHES Foundation – LadyBugs Virtual Series
FAIR Time for Women Coalition – Ladies Night Out In-Person Events
FAIR Time for Women Coalition – National Virtual Meetings
Hemophilia Council of CA – Got Diagnosis? Women with Bleeding Disorders Webinar
Hemophilia Federation of America – Blood Sisterhood
Hemophilia Federation of America – Mild Matters Conference
Hemophilia Federation of America – SisterSpace Monthly Chat Support Group (link unavailable)
Hemophilia Federation of America – Symposium
Hemophilia Foundation of Michigan – National Conference for Women and Teens with Hemophilia
Louisiana Hemophilia Foundation – Annual Women’s Retreat
National Bleeding Disorders Foundation – Annual Conference
National Bleeding Disorders Foundation – Females and Bleeding (FAB) Women’s Retreat (link unavailable)
NORD & National Bleeding Disorder Foundation – WGPPM Summit Overview
Octapharma – Am I the Only One? The Genetics of Von Willibrand Disease Webinar
Octapharma – Factor * Deficiency Screening and Care Guidelines for Women Webinar
Octapharma – Got Questions? Get Answers: Women, Bleeding Disorders, and Reproductive Health Webinar
Octapharma – Heavy Menstrual Bleeding – What’s a Woman to Do? Webinar
Octapharma – Iron Deficiency and Bleeding Disorders Webinar
Octapharma – Menopause: Expect the Unexpected Webinar
Octapharma – Menstruation and Bleeding Disorders: Managing Your Period Webinar
Octapharma – Pregnancy and Bleeding Disorders: It Takes a Team to Deliver an Infant Webinar
Octapharma – Women and Bleeding Disorders: Telling Our Story Our Way Webinar
Octapharma – Women and Bleeding Disorders: What They Have & What They Need Webinar
Reuters – Hemophilia Changemankers 2023 Webinar
The Coalition for Hemophilia B – 2023 Women’s Virtual Education & Empowerment Retreat
The Advancements to Serve Female Bleeders Report is a yearly compilation provided by FAIR Time for Women Coalition.
If you know of an event or resource that should be included in our 2024 report, please submit below.