Victor Grifols Roura Medical Symposium on Bone Health and Pain Disorders

This year’s Victor Grifols Roura Medical Pre-conference Symposium focused on several key aspects of “Bone Health and Pain in Bleeding Disorders.” A few leading clinician-researchers in the field were brought together to review the pathophysiology of bone disease, share current research data on bone health and the impact of pain in bleeding disorders, as well as offer physical therapy strategies and interventions for managing joints and associated pain.

You Can Impact the Future of the Inherited Bleeding Disorders Community: The National Research Blueprint

NBDF has taken the lead on an initiative to develop a National Research Blueprint (NRB), a community-driven journey to shape the future of research together with researchers, the HTC interdisciplinary team, non-profit organizations, government, and industry partners, and, most importantly, people directly affected by bleeding disorders. Our goal is to establish ways to conduct research in the most inclusive, coordinated and efficient manner that includes patients in all stages of research. In this session, we will provide updates on the NRB initiative and how you can get involved.

The VWD Guidelines and Me: Points of Shared Decision-Making

The new VWD guidelines were published in 2020 and heavily integrate the patient voice. But how can you use these in your conversations with healthcare professionals? This session will take a deeper dive into the specific recommendations, where patients and healthcare professionals need to decide together on the best plan of care. You will learn essential skills in shared decision-making to advocate for the care you need.

The Future is Now: Digital Health

While many of us likely dabbled in telehealth during the pandemic, digital health is proving to be that and so much more. Come hear about some of the latest innovations in technology that currently or will soon be available for those living with inheritable blood disorders. Share your questions and ideas on what digital health tools could improve your life.

Money Matters - Career Options

With new treatments, remote work options, and an ever-changing economy, work and career decision-making can feel like a whole new calculation these days. This session will cover what to consider about job options when you have a bleeding disorder, whether or what disclosure about your bleeding disorder should be made, how to communicate about needed accommodations, and what rights you have as a job applicant and as an employee.

PTSD in Chronic Conditions

During this session, you will gain a deeper understanding of post-traumatic stress disorder (PTSD) and how it can manifest for a person with a bleeding disorder or a family member. We will discuss how PTSD can affect your personal and professional relationships and ways you can seek both medical and non-medical help.

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.

What Everyone Who Treats with Factor Needs To Know About Inhibitors

If you treat with clotting factor, you may be at risk of developing an inhibitor. This workshop is for people who do not have an inhibitor but want to learn more about risk. We will explain the basics of inhibitors, how they develop, and how and why you should have a conversation with your healthcare provider about screening and monitoring for an inhibitor.

VWD Pre-Con

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.

Navigating Virtual School At Home

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.

Movement and Mobility

Throughout the different stages of living with a bleeding disorder, we can be or become immobile at one point or another. During this session, you will learn movement and meditation techniques that alleviate stress and anxiety that come along with a bleeding disorder.

Meet NYLI

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.

Parent Partnership & Mental Health

As a parent or primary caregiver of a child with a bleeding disorder, it's easy to put all of your focus into managing your child's care. Especially during this time, it is important to nurture your relationship with your partner - and to make your mental and emotional health a priority. This session will impart some personal experiences, as well as strategies and tips on how to balance your roles in your partnership and designate time to nurture your mental health and well-being.

Basics: VWD

This session will review the signs and symptoms of von Willebrand disease, discuss genetics and inheritance patterns, and define and compare the three types of VWD

OUCH! Tackling Pain Together

NHF’s Medical and Scientific Advisory Council (MASAC) recently approved new treatment guidelines for providers who administer opioids to treat pain in people with bleeding disorders. Come learn about the new guidelines from expert providers and consumers and what they might mean to you.

Blood and Product Safety

An update on safety and supply issues relating to blood and therapeutic products used by people with bleeding disorders. This will include discussion of product recalls the past two years, the January 2020 NBDF/HFA Safety Summit convened by the National Bleeding Disorders Foundation and Hemophilia Federation of America, emerging pathogens (e.g., COVID-19), and the latest safety surveillance information.

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