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Dynamics of Hemarthrosis & Vascular Remodeling: Long-term impact of hypertension and joint bleeds for People Living with Hemophilia
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.
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.
All webinars are from 2:00pm-3:00pm ET.
This session will examine the intersection between Asian and Pacific Islander (API) culture and life with a bleeding disorder. We will discuss successes, challenges, and cultural nuances. The session will close with a group discussion on how to continue to engage various API communities.
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 NHF'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.
Faith can provide many things to a person: comfort, love, and a community of support. But sometimes living with the realities of a chronic illness can result in a struggle between one’s beliefs and one’s day-to-day situation. In this session, we’ll discuss ways that faith can affect your perception of your bleeding disorder, how your bleeding disorder can affect your faith, and how to navigate the complexities and find a balance while still upholding your own beliefs. This session welcomes people of all faiths and beliefs.
Join us for the latest updates and get expert answers to your questions about how COVID-19 affects our community of people with bleeding disorders, healthcare providers, manufacturers, and others.
This session will present findings from a national needs assessment conducted by NHF 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.