Welcome to fwgbd.org
The Foundation for Women & Girls+ with Blood Disorders seeks to ensure that all women and girls with blood disorders are correctly diagnosed and optimally managed at every life stage.
The Foundation works to achieve this goal through:
Raising awareness and educating the key healthcare practitioners for each particular life stage, including but not limited to, family practice providers, pediatricians, internal medicine physicians, obstetricians, gynecologists, hematologists/oncologists, geriatricians, nurses, and social workers
Translating and disseminating provider information and research
How FWG+BD can help women/girls+ with blood disorders or who suspect they might have a blood disorder
The Foundation will educate providers so they will recognize symptoms; it will make information and education available to your healthcare providers.
FWG+BD is partnering with organizations across the country
The Foundation is working with several organizations to ensure that physicians, nurses, and allied healthcare professionals receive education and information about women’s blood disorders.
What you can do to help educate your healthcare providers across specialties
Talk to your care team about the Foundation for Women & Girls+ with Blood Disorders, a single source, single site for information and education, and the opportunity for discussion with their peers at fwgbd.org. Provide them with basic information and contact information about FWG+BD.
The following are links to useful resources for patients with blood disorders and their providers.
Hemophilia of Georgia (HoG) is a non-profit dedicated to providing services and support for people who have hemophilia, von Willebrand Disease, and other inherited bleeding disorders. The only agency of its kind in the state, Hemophilia of Georgia works to enhance clients’ care and quality of life while actively pursuing a cure through research funding. The Hemophilia, von Willebrand Disease & Platelet Disorders Handbook is offered by the Hemophilia of Georgia and is a comprehensive guide to living with a bleeding disorder. The handbook is offered online. Additionally, working in partnership with HoG, FWGBD has created downloadable resources for providers and women/girls to use together in the course of their treatment. These are:
- For Girls with Bleeding Disorders: What to Expect During Your First Gynecological Exam – English Version
- For Girls with Bleeding Disorders: What to Expect During Your First Gynecological Exam – Spanish Version
- Managing Your Bleeding Disorder: Before, During, and After Pregnancy
Hemophilia Federation of America (HFA) is a non-profit 501(c)3 organization incorporated in 1994 to address the evolving needs of the bleeding disorders community. HFA serves as a consumer advocate for safe, affordable, and obtainable blood products and health coverage, as well as a better quality of life for all persons with bleeding disorders. HFA has a Blood Sisterhood program, a peer network of women who support women with bleeding disorders on their life’s journey through diagnosis, treatment, and day-to-day living.
World Federation of Hemophilia (WFH): The World Federation of Hemophilia (WFH) is an international not-for-profit organization dedicated to improving the lives of people with hemophilia and related bleeding disorders.
National Bleeding Disorders Foundation (NBDF): Formerly known as the National Hemophilia Foundation, is dedicated to finding better treatments and cures for bleeding and clotting disorders and to preventing the complications of these disorders through education, advocacy, and research. NBDF has many programs, including those focused on women, such as “Women with Bleeding Disorders” and the Victory for Women initiative, creating and providing a health support, education, and resource page for women and providers in the bleeding disorders community.
Cooley’s Anemia Foundation: The Cooley’s Anemia Foundation is dedicated to serving people afflicted with various forms of thalassemia, most notably the major form of this genetic blood disease, Cooley’s anemia/thalassemia major.
The Iron Disorders Institute (IDI) exists so that people with iron disorders receive early, accurate diagnosis, appropriate treatment, and are equipped to live in good health. Provides information to patients and healthcare professionals.
Other Resources:
Iron Deficiency Anemia (FWGBD Tear-Off Sheets)
This common condition, especially among those who menstruate – and even more for those who suffer from heavy menstrual bleeding, introduces the condition, symptoms, diagnosis process, and treatment options.
Iron Deficiency – English
Iron Deficiency – Spanish
Let’s Talk Period: This website aims to increase awareness regarding the signs and symptoms of bleeding disorders. It was founded by Dr. Paula James, a hematologist at Kingston General Hospital.
Know Your Flow: A Guide to Periods When You Have a Bleeding Disorder: This book has been developed by healthcare professionals, people living with bleeding disorders, and caregivers to people living with bleeding disorders. They contributed their expertise in living with and/or managing a bleeding disorder. This booklet is intended for informational purposes only. This project was led by Dr. Anthony Chan and Casey Li at Hamilton Health Sciences as a part of DATCH: Developmentally Appropriate Tools for Children with Hemophilia. This project was sponsored by Novo Nordisk Canada Inc.
COR2ED: This organization has a video resource called “Bleeding Disorders and Periods: What to Expect” developed by experts, and in collaboration with patients, to help girls with a bleeding disorder understand what to expect from the start of menstruation and what can be done about heavy menstrual bleeding.
- YouTube Video – Bleeding Disorders and Periods: What to Expect
- Watch on the COR2ED Website (aimed at HCPs)
Ready.Set.Flow: Created by the Jeanne M. Lusher Center for Hemostasis and Thrombosis, the Ready.Set.Flow Website was created to help people learn about periods. The Center specializes in caring for individuals who are having heavy bleeding during their period. Ready.Set.Flow offers resources, in addition to a screening tool for patients to assess if they should seek medical care to address heavy menstrual bleeding.
Other Resources:
Menstruation Tear-Off Sheets from FWGBD
Hermansky-Pudlak Syndrome Network: a volunteer, not-for-profit support group for people and families dealing with Hermansky-Pudlak Syndrome and related disorders such as Chediak Higashi syndrome.
Platelet Disorder Support Association (PDSA) provides information and support to individuals affected by platelet disorders.
Rare Coagulation Disorders Resource Room: This Resource Room provides current and searchable information on the basic science, clinical management, available laboratory, and genetic testing, clinical trials, and global research initiatives for very rare and heterogeneous coagulation disorders. It was created to address the needs of both individuals with rare coagulation disorders and their healthcare providers.
Hermansky-Pudlak Syndrome Network: a volunteer, not-for-profit support group for people and families dealing with Hermansky-Pudlak Syndrome and related disorders such as Chediak Higashi syndrome.
Cure HHT is a nonprofit organization dedicated to finding a cure for HHT while saving the lives and improving the well-being of individuals and families affected by HHT.
Sickle Cell Disease Association of America (SCDAA) advocates for and enhances the quality of health, life, and services for individuals, families, and communities affected by sickle cell disease and related conditions while promoting the search for a cure for all people in the world with sickle cell disease.
Sickle Cell Disease and Pregnancy
Women with sickle cell disease are at greater risk for developing health problems during pregnancy than women without SCD. In collaboration with the National Center on Birth Defects and Developmental Disabilities with the Centers for Disease Control and Prevention, the American Society of Hematology, and the Sickle Cell Reproductive Health Education Directive, FWGBD developed the following fact sheets on preconception, prenatal, and postpartum care for women with sickle cell disease (SCD).
- Women with Sickle Cell Disease and Preconception Care – [Fact Sheet Download]
- Women with Sickle Cell Disease and Prenatal Care – [Fact Sheet Download]
- Women with Sickle Cell Disease and Postpartum Care – [Fact Sheet Download]
Sickle Cell Trait Resources
Sickle Cell Trait Toolkit: The CDC, together with the American Society of Hematology (ASH) and the Sickle Cell Disease Association of America (SCDAA), created the Sickle Cell Trait Toolkit. The toolkit is a collection of resources to increase understanding of sickle cell trait.
Canadian Health & Family: This organization has a new program focusing on raising awareness of von Willebrand disease with expert Dr. Paula James. To learn more about this program and about VWD, please visit: www.healthandfamily.ca/VonWillebrand
Other Resources:
- Could I Have a Bleeding Disorder? (Brochure)
- Genetic Counselor Awareness Day – English (Flyer)
- Genetic Counselor Awareness Day – Spanish (Flyer)
- Managing Dental Patients with Bleeding Disorders (Flyer)
- MORE: Educating Providers. Changing Lives. A Resource About Women with Bleeding Disorders for You to Share with Your Provider. A brochure brought to you by the Foundation for Women & Girls with Blood Disorders and Hemophilia Federation of America
- The National Blood Clot Alliance (NBCA) is a patient-led, voluntary health advocacy organization