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 providers 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
What the Foundation will do first: The Foundation will begin with a focus on educating healthcare providers across specialties. Building strength in this area, we will then evolve to directly provide education and information to women and girls.
How the Foundation can help women and girls with blood disorders or who suspect they might have a blood disorder now: The Foundation will educate providers so they will recognize symptoms; it will make information and education available to your healthcare providers.
FWGBD 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 physicians about the Foundation for Women & Girls with Blood Disorders-their new 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 FWGBD.
The following are links to useful resources for patients with blood disorders and their providers.
American Society of Hematology (ASH): ASH recently released revised clinical practice guidelines to support adult and pediatric patients with immune thrombocytopenia (ITP.) These evidence-based guidelines have been developed to help healthcare providers and patients make the best care decisions.
American Thrombosis and Hemostasis Network (ATHN): ATHN is using technology for care and research in the bleeding disorders community in new, important, and exciting ways. A nonprofit organization established in 2006, ATHN has partnered with more than 120 hemophilia treatment centers around the country to establish a safe, secure national database to improve the quality of care for patients with bleeding disorders.
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
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.
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.
Below are the links to their video:
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.
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 two 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.
Webinar: Diagnosis in 16 Years: A Woman’s Health, Public Health Crisis
Quality clinical services, specifically for women and girls with bleeding disorders, are key to accurate diagnosis, reducing complications and diminished quality of life, and improving women’s health. Recently, the Hemophilia Federation of America’s (HFA) Blood Sisterhood program in partnership with the Foundation for Women & Girls with Blood Disorders (FWGBD) for an important webinar that introduced and provided an overview of the Foundation’s WGBD Clinics of Excellence Initiative and Directory Project. The Directory identifies HTCs that offer services for women and girls, and those that have specific Women & Girls Bleeding Disorder Clinics. This Webinar originally aired on May 19th, 2016. View this Webinar
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.
HiHo Kids: Check out this video “Kids Talk Vaginas with a Gynecologist” featuring Anne-Marie E. Amies Oelschlager, MD of Seattle Children’s Hospital.
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.
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.
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.
The National Blood Clot Alliance (NBCA) is a patient-led, voluntary health advocacy organization. NBCA volunteers include many of the nation’s foremost experts on blood clots and blood clotting disorders. NBCA programs include patient education and professional training on the signs, symptoms, and prevention of blood clots and clotting disorders.
The National Hemophilia Foundation (NHF) 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. NHF has an entire section called “Women Also Bleed” where women can go to learn more about bleeding and clotting disorders. Victory for Women (V4W) is NHF’s health initiative to address the critical issues faced by women with bleeding disorders. It focuses on educating women and healthcare providers about the symptoms of bleeding disorders and provides resources for medical assistance.
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.
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 that 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.
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.
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.
More Patient Resources
- 100 Questions & Answers about Deep Vein Thrombosis and Pulmonary Embolism
- 100 Questions & Answers about von Willebrand Disease
- 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
- National Heart, Lung, and Blood Institute. In Brief. Your Guide to von Willebrand Disease