Yes, We Mind the Gap
Yes, We Mind the Gap
Women and girls with bleeding disorders face delays in diagnosis and care. Learn how research and community voices are changing the future of treatment.
New Paper Features Narrative History of Hemophilia Screening in Women
New Paper Features Narrative History of Hemophilia Screening in Women
A newly published paper takes a sweeping view of hemophilia testing in women, a historically underserved population.
All About HTCs
In this video, you will hear about how to prepare for a visit to your HTC, or Hemophilia Treatment Clinic. You will also learn a bit about the different healthcare providers available to you at an HTC.
Communicating with a Hematologist
In this video, you will hear about how to prepare for a visit with your hematologist and how to advocate for your needs to get the best possible care.
Communicating with an OB/GYN
In this video, you will hear about how to prepare for a visit with your gynecologist and how to advocate for your needs to get the best possible care.
Communicating with a Healthcare Provider
In this video, you will hear about how to prepare for a visit with your healthcare provider and how to advocate for your needs to get the best possible care.
Todo Sobre los HTC
En este vídeo, le explicaremos cómo prepararse para una visita a su HTC, o Clínica de Tratamiento de la Hemofilia. También aprenderá un poco acerca de los diferentes proveedores de atención médica disponibles para usted en un HTC.
Hablando con un Hematólogo
En este vídeo, le explicaremos cómo prepararse para una visita con su hematólogo y cómo defender sus necesidades para obtener la mejor atención posible.
Hablando con un Ginecólogo Obstetra
En este vídeo, aprenderás a prepararte para una visita al ginecólogo y a defender tus necesidades para recibir la mejor atención posible.
Hablando con un Profesional Médico
En este vídeo le explicamos cómo prepararse para una visita al médico y cómo defender sus necesidades para recibir la mejor atención posible.
Consejos para Traducción e Interpretación
En este vídeo, aprenderás un poco más sobre betteryouknow.org, concretamente sobre los distintos recursos imprimibles disponibles en el sitio web y cómo utilizarlos mejor.
Recursos Para Usted
¿Cómo puede betteryouknow.org satisfacer mejor sus necesidades? En este vídeo le mostraremos este sitio web y le indicaremos qué páginas pueden resultarle más útiles en los distintos momentos de su diagnóstico.
Sangrando Qué
¿Qué son los trastornos hemorrágicos? En este vídeo aprenderás qué son los trastornos hemorrágicos, sus signos y síntomas, y por qué es importante buscar atención médica.
Lo Que Viene Despues
Tiene signos y síntomas de un trastorno hemorrágico, ¿y ahora qué? En este vídeo, le explicaremos los siguientes pasos para buscar un diagnóstico de trastorno hemorrágico que le ayude a recibir la atención que necesita.
More From Betteryouknow.org
In this video, you will learn a bit more about betteryouknow.org, specifically more about the various printable resources available on the website and how to best use them.
What Betteryouknow.org Has for You
How can betteryouknow.org best serve your needs? In this video, you’ll get a tour through this website, with pointers on which webpages can be most helpful throughout the different points in your diagnostic journey.
Bleeding What?
What even are bleeding disorders? In this video, you’ll learn about what bleeding disorders are, their signs and symptoms, and why it’s important to seek out care.
What's Next?
You have signs and symptoms of a bleeding disorder – what now? In this video, we will walk through the next steps in seeking out a bleeding disorder diagnosis to ultimately help you receive the care you need.
HANDI Highlights Resources for Historically Underserved Population
HANDI Highlights Resources for Historically Underserved Population
This HANDI Highlights is dedicated to inherited bleeding disorders, and women, girls, and people with the propensity to menstruate.
Charting New Waters in Women's Bleeding Disorders Care
Charting New Waters in Women's Bleeding Disorders Care
A session led by Dawn Rotellini spotlighted inclusive care for women with bleeding disorders, introducing the WGPPM concept and emphasizing access to treatment, education, and stigma reduction as key areas for advancing women's health.
NBDF Announces New Treatment Recommendations for Bleeding Disorders
NBDF Announces New Treatment Recommendations for Bleeding Disorders
New documents issued by NBDF’s Medical and Scientific Advisory Council (MASAC) cover a wide range of topics relevant to bleeding disorder patients in the U.S. and abroad.
Study Results Encourage Discussion of Therapeutic Options for VWD Patients with Menorrhagia
Study Results Encourage Discussion of Therapeutic Options for VWD Patients with Menorrhagia
While the majority of women with von Willebrand disease (VWD) will experience heavy menstrual bleeding (HMB) often associated negative impacts on overall health and quality of life, available data relevant to effective treatment is limited.
Gynecologists Have Significant Part to Play in Shrinking Diagnostic Gaps
Gynecologists Have Significant Part to Play in Shrinking Diagnostic Gaps
People with inheritable bleeding disorders who have the potential or ability to menstruate will likely experience especially heavy menstrual bleeding in their lifetime.
FDA Approves First-Ever Nonprescription Oral Contraceptive
FDA Approves First-Ever Nonprescription Oral Contraceptive
The new approval will allow consumers to purchase this oral contraceptive medication without a prescription at stores and online.
Inequities in Thrombosis and Hemostasis Lab Testing the Focus of Illustrated Review
Inequities in Thrombosis and Hemostasis Lab Testing the Focus of Illustrated Review
Explore a review on biases in laboratory reference intervals for thrombosis and hemostasis, highlighting disparities and action items for health equity.
Continued Conversation on the State of Access to Women’s Health Care
Continued Conversation on the State of Access to Women’s Health Care
Recent changes in access to women and girls’ health care are likely to have detrimental effects for the blood and bleeding disorders community.
Coexisting Women's Health Conditions
Bleeding disorder symptoms can sometimes be worsened or changed by other conditions that often affect women, such as endometriosis or polycystic ovary syndrome
NHF Addresses Potential Contraception Bans
NHF Addresses Potential Contraception Bans
Abortion and contraception can both be critical components of an individual’s health care journey. However, it is important to not conflate abortion and birth control as one in the same – both are medical in nature but serve different purposes.
NHF Responds to Roe v. Wade Reversal
NHF Responds to Roe v. Wade Reversal
The National Hemophilia Foundation (NHF) is aware of today’s Supreme Court decision around the reversal of Roe vs. Wade. NHF will continue to be a champion and stand firm in the fight for women’s health, health equity, and access to care for all.
Starting the Conversation with Hajar Abusief
Starting the Conversation with Hajar Abusief
Meet hemophilia patient, student, and advocate Hajar Abusief.
Starting the Conversation with Dr. Bethany Samuelson Bannow
Starting the Conversation with Dr. Bethany Samuelson Bannow
Dr. Bethany Samuelson Bannow sat down with NHF to discuss her co-authored Twitter account, Dr. Period Hackers.
Starting the Conversation with Dr. Marybec Griffin
Starting the Conversation with Dr. Marybec Griffin
Dr. Marybec Griffin graciously sat down with NHF for an informative dialogue to share information on her co-authored Twitter account, Dr. Period Hackers. Read these Q&As and watch the video to learn more, and follow Dr. Griffin on Twitter!
Public Health for Blood Disorders Series Now Available Online!
Public Health for Blood Disorders Series Now Available Online!
This series was designed to inform and engage the community about the ongoing programming and initiatives of CDC-funded groups that serve those impacted by rare blood disorders.
VWD: The Realities of Your Period
NBDF provides free quality education on issues that matter to the bleeding disorders community. This video is on vwd: the realities of your period
Clinical Study and New Website to Focus on von Willebrand Disease and Pregnancy
Clinical Study and New Website to Focus on von Willebrand Disease and Pregnancy
This new study was developed to increase understanding of how best to manage bleeding during delivery and the postpartum period in women with VWD.
New Data Analysis Sheds Light on Bleeding Patterns in Young VWD Patients
New Data Analysis Sheds Light on Bleeding Patterns in Young VWD Patients
The authors of this study focused primarily on birth characteristics, bleeding episodes, and complications.
Study Looks at Neuraxial Anesthesia and Postpartum Complications in Hemophilia
Study Looks at Neuraxial Anesthesia and Postpartum Complications in Hemophilia
Neuraxial anesthesia, a focus of this study, refers to the administration of local anesthetics and analgesia to targeted locations in the spinal area.
May 2021 Wednesday Webinars
May 2021 Wednesday Webinars
NHF's Wednesday Webinars for May 2021 will focus on Women's Health Month, featuring topics of interest to both patients and healthcare providers who are interested in issues faced by women with inheritable blood disorders.
Pregnancy and Childbirth in Women with Bleeding Disorders
Pregnancy and childbirth for women with bleeding disorders take extra planning and care. Come learn from an expert and community member about issues women with bleeding disorders face when pregnant and giving birth, and how to advocate for the care you need.
Women Bleed Too
Women and girls with bleeding disorders often deal with particular issues and taboos related to diagnosis, symptoms, access to care. In this session, an expert who works to improve the quality of life for women and girls with bleeding disorders will discuss essential information on the challenges of getting a diagnosis and accessing care and treatment. In addition, an affected individual will share their experience as a woman with a bleeding disorder.
Wednesday Webinar February 2021 Speakers
Wednesday Webinar February 2021 Speakers
Register for the Wednesday Webinar series.
New Guidelines on the Diagnosis and Management of VWD
New Guidelines on the Diagnosis and Management of VWD
These guidelines are an important step in our quest to address the difficulties individuals go through to obtain an accurate, timely diagnosis, and appropriate treatment.
Men? I Feel Like a WOMAN... with a Bleeding Disorder
Expanding your PT evaluation skills to include the unique considerations for women with bleeding disorders.
Small Study Looks at Use of Epidural Analgesia During Labor in VWD Type 1
Small Study Looks at Use of Epidural Analgesia During Labor in VWD Type 1
A research abstract presented at the recent Thrombosis & Haemostasis Summit of North America 2020 Virtual Conference suggested that epidural analgesia may be a safe option for pregnant women with von Willebrand disease (VWD) type 1, provided clotting factors are maintained at certain levels.
Public Health for Women & Girls
NOT AVAILABLE FOR CREDIT
After a successful public health offering at NHF’s 2019 BDC, NHF decided to collaborate with several national blood disorder advocacy organizations to deliver two public health sessions for chapters and consumers. This session will address women’s issues in public health and was created by the National Blood Clot Alliance, Center for Inherited Bleeding Disorders, Cooley’s Anemia Foundation, Foundation for Women and Girls with Blood Disorders, NHF, and HFA.
Gynecologic Management for Female with Bleeding Disorders
*ANCC
Moderator:
Kelly Tickle, MSN, APN, PPCNP-BC
Pediatric Nurse Practitioner, Children’s Healthcare of Atlanta
Speaker:
Kalinda Woods, MD, FACOG
Assistant Professor, Department of Gynecology and Obstetrics
Emory University School of Medicine
By the end of this session, the participant should be better able to:
Last Chance to Access Accredited Education on Females with Bleeding Disorders
Last Chance to Access Accredited Education on Females with Bleeding Disorders
Primary care physicians, obstetrician/gynecologists, nurse/nurse practitioners, dentists, oral surgeons and other allied professionals are all encouraged to take advantage of these online activities.
Women and Bleeding Disorders
Discover the symptoms of bleeding disorders in women, including von Willebrand disease and mild hemophilia, and learn how to get a proper diagnosis and care.
Women
NBDF empowers and supports women with bleeding disorders through education & advocacy. Explore our resources & initiatives designed for better health outcomes.