National Harbor, MD – August 17, 2023 – The National Hemophilia Foundation (NHF) has officially changed its name to the National Bleedi
The National Bleeding Disorders Foundation (NBDF) is proud to announce its achievement of the prestigious Platinum Seal of Transparency from Candid (formerly known as Guidestar), placing NBDF among the top 0.1% of U.S.
In a significant advancement for von Willebrand Disease (VWD) research and treatment, an international team of experts, including patients, clinicians, and researchers, has developed the first-ever core outcome set (COS) for VWD clinical trials.
The National Bleeding Disorders Foundation is proud to support an important research initiative led by Emily Agen, a genetic counseling graduate student at the University of Michigan, who is
On April 2, 2024, 8 News Now covered our Las Vegas Chapter's Winter Wine Walk with Stephanie Dupree.
Data provided by the National Bleeding Disorders Foundation (NBDF) was referenced recently in the coverage of a tragic case in Chelsea that took a dark turn for 3-year-old Yael Guardado Prudencio, a child with hemophilia and a seizure disorder.
Recruitment is now open for Own Your Path- a program for young adult males with hemophilia who are currently in the transition years between 18-29. We know that maintaining adherence to a prophy regimen can have short and long -term health benefits.
NHF leadership opens the 2022 Bleeding Disorders Conference with scripted remarks.
In the past few years, NBDF has shared its vision for 2030 and started to work alongside the community to get there. Join us for a panel discussion and community conversation about the progress to date and what else NBDF needs to consider as it forges ahead in partnership aiming for the best care possible for the inheritable blood disorders community by 2030.
Meet NHF's Vice President of Research Strategy, Michelle Witkop! Michelle took her passion for pain management and impactful work and joined NHF. She continues to be a vital part of the NHF community and assisting families and patients.
FOR IMMEDIATE RELEASE
MEDIA CONTACT:
Ilana Ostrin
212 328 3769
NBDF provides free quality education on issues that matter to the bleeding disorders community. This video is asks what patient centricity means to me: a community conversation
Val and I first got to know one another 30 years ago, when we were opposing one another in an election for president of the National Hemophilia Foundation (US).
During this session participants will learn from a panel of healthcare providers, including a genetics counselor, obstetrician/gynecologist and hematologist. The panel will discuss topics such as genetic counseling, preparing for pregnancy and birth, partner relationship issues, and more.
During this session, participants will learn from a panel of community members who share their experiences on various reproductive health topics. The panel will discuss topics such as family planning, relationship/fertility obstacles, shared decision-making, self-advocacy, educating your child, and more.
The World Federation of Hemophilia (WFH) Twinning Program creates short-term collaborative partnerships between Hemophilia centers, patient organizations and youth groups in developed and developing countries.
September 7, 2021
FOR IMMEDIATE RELEASE
Media Contacts
Media Contact:
Brett Spitale, VP of Advancement
bspitale@hemophilia.org
646-784-0368
FOR PUBLIC COMMENT - JUNE 3, 2021
NHF's Wednesday Webinars for April 2021 will feature an array of speakers and topics of interest to both healthcare providers and patients and families with blood disorders alike.
April Webinars
All webinars are from 2:00pm-3:00pm ET.
This session will examine the intersection between Western Asian/Muslim culture and life with a bleeding disorder. We will discuss challenges and successes confronting generational issues, acceptance, and cultural nuances. The session will close with audience discussion on how to enhance engagement within this community. No industry representatives will be allowed in this session.
The von Willebrand disease (VWD) pre-conference brings together the VWD community to connect in a lively, engaging and supportive educational environment. This year, we will focus on the elements of reconnecting, rebuilding and refocusing as a community. We will explore the many ways that we as a community can help raise awareness of VWD and help those who are unaware of their status. We’ll also discuss new medical updates and NHF’s course of action with VWD. Sponsored by CSL Behring.
During COVID-19, many children are now figuring out how to learn online through virtual schooling. Many parents and caregivers are now tasked with balancing work, online school, and child care. This session will discuss strategies, tips, and stories of how to navigate the online school and virtual learning with a child who has a bleeding disorder.
What does it mean to be a future leader of the Bleeding Disorders Community? Is it possible to make a difference at my chapter while I'm still a teen? If you're looking to get involved these questions are probably on your mind. Come meet members of NBDF's National Youth Leadership Institute (NYLI), who will share how they've been able to make a difference through Education, Advocacy, and Chapter Work training. Not only are they making a difference - they're leveling up in the real world as a result.
This session will present findings from a national needs assessment conducted by NBDF in partnership with the CDC about the experiences and needs of people with bleeding disorders within African American communities. The group will discuss implications for individuals, chapters, and partners to serve African American communities.
