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Novo Seven Unavailable in 8 mg Vials Due to Supply Constraints Beginning in January 2024

Novo Seven Unavailable in 8 mg Vials Due to Supply Constraints Beginning in January 2024
Due to supply constraints, Novo Nordisk will be unable to provide the 8 mg vial of NovoSeven® RT from January until mid-2024. Importantly, the overall supply of NovoSeven® RT is expected to remain intact as other vial sizes are available.

Hepatocellular Cancer Screening and Gene Therapy Preparedness the Focus of New Recommendations

Hepatocellular Cancer Screening and Gene Therapy Preparedness the Focus of New Recommendations

Two new documents have been issued by the NBDF’s Medical and Scientific Advisory Council (MASAC), which periodically writes recommendations and advisories on treatment, research, and other general health concerns of the inheritable bleeding disorders community.

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.

National Bleeding Disorders Foundation raises $200,000 at the most successful Red Tie Soiree to date.

National Bleeding Disorders Foundation raises $200,000 at the most successful Red Tie Soiree to date.
CHICAGO, Ill. — The National Bleeding Disorders Foundation (NBDF) painted the town red at its annual Red Tie Soiree at the Chicago Cultural Center on October 27. The signature fundraising gala raised over $200,000 for the inheritable blood and bleeding disorders community- the most money the event has ever raised.

Court Rules in Favor of Patients regarding Copay Accumulator Adjustor Programs

Court Rules in Favor of Patients regarding Copay Accumulator Adjustor Programs
In a major victory for patients who depend on prescription drugs, Judge John D. Bates of the U.S. District Court for the District of Columbia struck down a federal rule that allowed health insurers to not count drug manufacturer copay assistance towards a beneficiary’s out-of-pocket costs.

Coalition Advocates for Substance Use Disorder/Behavioral Health Services for Patients With Bleeding Disorders

Coalition Advocates for Substance Use Disorder/Behavioral Health Services for Patients With Bleeding Disorders
Discover the coalition's mission to improve mental health services access for bleeding disorder patients. Learn about their efforts to change guidelines.

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.

14 Sep

MSKUS

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Navegando el Dolor

Muchas personas con trastornos hemorrágicos consideran que el dolor relacionado con la hemorragia y el daño articular afectan a su calidad de vida. Esta sesión mejorará la comprensión de cómo el dolor afecta a las personas con trastornos hemorrágicos y los enfoques para manejar el dolor. También proporcionará recursos para comunicarse con su proveedor a fin de garantizar que el dolor asociado a la hemorragia y el daño articular se aborden adecuadamente.

The Basics of Innovative Therapies: What You Need to Know

We continue to see significant research and innovation in the treatment of Hemophilia.  It is becoming more important than ever to stay informed on all the advancements and innovation  – what they are, how they work in the body and how safe they are.   Understanding all the options including currently approved treatments, the pros and cons and the promise and limitations of each type of therapy will enable community members to have informative conversations with their providers and to ultimately make the best decision on treatment.  This presentation is designed to

Gene Therapy Basics for Hemophilia: What You Need to Know

Recently there has been an explosion of innovative research in the treatment of Hemophilia utilizing gene therapy technology. This workshop will help you develop a basic understanding of the complexities of gene therapy including terminology, how gene therapy works, and identifying the potential, limitations, risks and unknowns associated with gene therapy. We also provide a brief introduction to other novel therapies and an overview of what treatments are currently approved.

How Do YOU Navigate?

Learning through the lived experiences of others is helpful in navigating the landscape of bleeding disorder care. In this workshop, participants will be given an opportunity to learn through investigating scenarios building on the previously delivered material but also through discussions of the issues they are facing in their own everyday life. By the end, participants will receive practical tips and will feel connected and empowered.

Choose to Take Control

Being a good consumer is more than just access to products and care, it is also about knowing the do’s and don’ts that impact your daily life with a bleeding disorder. It’s about understanding your disease, choosing a care team, clearly communicating your needs and accepting responsibility for making the decisions that ensure your safety and wellbeing. During this interactive presentation, we will discuss tips, tricks and tools available to help you become a better self-advocate and an overall good consumer.

Playing it Safe

Staying active is imperative for people with bleeding disorders, it helps you retain and regain joint health, prevent mobility issues and lead to a better quality of life. Join this presentation to find motivation, support, and easy-to-use resources that can help you find the sport or exercise that's the right fit for you.

Navigating Pain

Many people with bleeding disorders find that bleeding-related pain and joint damage impact their quality of life. This session will improve understanding of how pain affects people with bleeding disorders and approaches for managing pain. It will also provide resources for communicating with your provider to ensure that pain associated with bleeding and joint damage is addressed appropriately.

Pregunte a los expertos

¿Tiene una pregunta candente que hacerle a nuestro panel de expertos? Esta sesión ofrecerá a los participantes la oportunidad de interactuar, participar y hacer preguntas que inviten a la reflexión a un panel de proveedores de atención médica interdisciplinarios en tiempo real. Esta discusión incluirá Miguel Escobar, MD; Kelli Fraga, PT, DPT; Sabrina Farina, LMSW

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.

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.

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.

COVID-19 Vaccination Guidance from NHF, WFH, EAHAD, and EHC for the Bleeding Disorders Community

COVID-19 Vaccination Guidance from NHF, WFH, EAHAD, and EHC for the Bleeding Disorders Community

COVID-19 vaccination guidance for people with bleeding disorders

Guidance from the World Federation of Hemophilia (WFH), European Association for Haemophilia and Allied Disorders (EAHAD), European Haemophilia Consortium (EHC), and U.S. National Hemophilia Foundation (NHF)

Pain Management: Tool Box Not a Pill Box

The session will discuss pain related to bleeding disorders in the developmental stages and how infants, children and adolescents with bleeding episodes experience, express and cope with pain. It will review the latest research on management and assessment of pain in children and provide guidance on pain education for families and caregivers. Treatment and intervention strategies for physical therapists will be reviewed and followed by a group discussion.

Playing It Safe: Physical Activity with a Bleeding Disorder

Let's get moving! This free webinar, led by expert physical therapists, will help you find the right activity for you. You will learn how to work with your healthcare providers to find engaging exercises that will benefit you, regardless of your age, current fitness level -- and be safe for you as a person with a bleeding disorder. Register today to take a healthy step!

The Art of Speaking Up

People with bleeding disorders and caregivers often educate schools, workplaces, health care teams and communities to ensure the right care and support to thrive. The Hemophilia Experiences, Results and Opportunities (HERO) study found that while many people are satisfied with support from partners, friends and family, a major roadblock to support from others was lack of knowledge about bleeding disorders.

To Reveal or Conceal: Navigating Disclosure of a Bleeding Disorder

Deciding when and how to talk about a bleeding disorder can be challenging, but it is an important part of life for people with bleeding disorders and caregivers. This session explores ways to communicate about bleeding disorders in real-life situations. Topics covered may include social situations, dating and relationships, employment, disclosure to family, and social media.

Speakers:

Edward Kuebler, MSW, LLC
Cathy Tiggs, MSSA, LISW

Skills for Coping with Anxiety and Depression

Life with a chronic condition can be challenging at times, adding stress to the lives of people with bleeding disorders and their caregivers.  The Hemophilia Experiences, Results and Opportunities (HERO) study, conducted by Novo Nordisk, found that while many people experience anxiety when adapting to life with a bleeding disorder, this can be reduced when quality information, advice and support networks are available.  Mental health and physical health are closely related, and this presentation will discuss how stress can affect life, how to know when life is out of bal