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All Patients & Families

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.

Jugando a lo Seguro

Mantenerse activo es imprescindible para las personas con trastornos hemorrágicos, ya que ayuda a conservar y recuperar la salud de las articulaciones, a prevenir problemas de movilidad y a mejorar la calidad de vida. Únase a esta presentación para encontrar motivación, apoyo y recursos fáciles de usar que pueden ayudarle a encontrar el deporte o el ejercicio más adecuado para usted.

Communicating with Providers

YOU are your most important advocate in the health care system. If you have a child, you are also their most important advocate. In order to be a strong advocate for yourself and/or your child, it is important for you to learn how to make your concerns heard and understood. By improving communication and advocacy skills, participants will learn to speak more effectively and secure appropriate treatment.

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 provide a basic overview

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.

Knowing the Players: Being a Savvy Consumer

Having a bleeding disorder comes with great responsibility to get the best care possible. This interactive session will give you information on the sometimes confusing acronyms – HTC, 340B, HRSA, etc. – which can be a roadblock to getting care. We will also cover the critical questions to ask when choosing a factor provider. Finally, we will address the responsibility that parents, patients, pharmaceutical, and homecare representatives have in following the rules and laws that affect us all.

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.

Looking from the Outside in: Musculoskeletal Ultrasound

Ultrasound of the joints and muscles is slowly becoming a staple in many Hemophilia Treatment Centers to detect bleeding episodes and to follow joint health over a long time. But how does this work and what are the benefits? Participants will walk away feeling informed about this innovative technique and being able to engage with their healthcare provider about joint health.

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.

Gene Therapy: A Candid Conversation

The realization that gene therapy could be just around the corner is both daunting and exciting. Join us for a balanced, patient-centric discussion on gene therapy from multiple perspectives: a provider, a patient in a gene therapy clinical trial, a patient on a newer therapy, and a patient who is satisfied with conventional factor replacement therapy.

Gene Therapy: Getting Up to Speed

Advancements in gene therapy are happening at a fast clip. Having a solid understanding of this technology is important to patients, caregivers and families. Join us for an in-depth discussion of gene therapy including historical aspects, key terms, various approaches to the technology, and how it may revolutionize hemophilia treatment.

El Costo de la Reentrada

Después de un año difícil impulsado por la pandemia de COVID19, esperamos una nueva normalidad. Pero, ¿cómo afecta la reincorporación a la sociedad a la salud mental y cuáles son las implicaciones específicas para la comunidad de trastornos hemorrágicos? En esta sesión desmenuzaremos este tema y recibiremos consejos prácticos de un profesional de la salud mental para combatir el desgaste emocional.

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

Inhibitor Education Series: Baby Steps Navigating Past the Pandemic

After a challenging year driven by the COVID19 pandemic, we are looking forward to a new normal. But how does re-entering society impact mental health and what are specific implications for the bleeding disorder community? In this session, we will unpack this topic and receive practical advice from a mental health professional to combat the emotional toll.

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.

Faith and Bleeding Disorders

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.

De lo que todos los que tratan con factor deben saber sobre los Inhibidores

Si trata con factor de coagulación, puede estar en riesgo de desarrollar un inhibidor. Este taller es para personas que no tienen un inhibidor pero desean aprender más sobre el riesgo. Explicaremos los conceptos básicos de los inhibidores, cómo se desarrollan y cómo y por qué debería conversar con su proveedor de atención médica sobre la detección de un inhibidor. 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.

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. The presentation will also cover laboratory diagnosis and its challenges, and the therapeutic options available for people with VWD. In addition, you will learn important skills to advocate for yourself and loved ones.

Basics: Hemophilia

Whether you or someone in your family has been recently diagnosed with hemophilia, or you've lived with hemophilia your entire life and want a refresher on the fundamentals, this session is for you. We will explain what hemophilia is, how it's treated, and what issues may arise at different life stages.

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 NHF/HFA Safety Summit convened by the National Hemophilia 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)

Nipping Pain in the Bud: The Science Behind Medical Marijuana

Patients are increasingly turning to cannabis-related pharmaceuticals for pain relief and management. This session will address the available evidence, and the negative or positive hype from the facts, and discuss the need for more research. Dispensation, delivery and dose control will be discussed as well as implications for the bleeding disorders community, ranging from pain management to fall risk in our aging hemophilia population.

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.

Learning to Let Go: Fostering Independence

Let’s face it, adolescence is a challenging time even under the best of circumstances. As parents of teens with hemophilia and an inhibitor, one of those biggest challenges, preparing to let go, can be especially difficult. As children grow into their teen years, parents undergo a transition of their own, from advocates and fierce protectors to ones willing, in fits and starts, to take a step back. In this webinar, a social worker will join a teenager, young adult and mom to discuss this evolution and techniques for engendering independence.

Is Hemophilia a Secret? Disclosure in the 21st Century

The issue of disclosure is not always as straightforward as it might seem. The question of when and how to talk about one's bleeding disorder can be complicated and will arise many times in a person’s life. Watch the online webinar as social worker Cathy Tiggs and two individuals affected by hemophilia and inhibitors discuss the social, personal and professional implications of disclosure in the digital age and social media.

Presenters/Panelists:

Half Life and Your Life

It's time to clear up the confusion about half-life of clotting factor. You will leave this session with a deeper understanding of how long factor replacement lasts in a person's body, how it prevents joint bleeds and allows for physical activity, and how it can affect prophylaxis schedules.

Communicating with Your Provider About Pain

Many people with bleeding disorders find that bleeding-related pain and joint damage impact their quality of life, according to patients and caregivers surveyed in the Hemophilia Experiences, Results and Opportunities (HERO) study conducted by Novo Nordisk.  This session will improve understanding of how pain affects people with bleeding disorders, and will offer guidelines for managing acute and chronic pain.  It will also provide resources for communicating with your provider to ensure that pain associated with bleeding and joint damage is addressed appropriately.

Getting Unstuck: Overcoming Roadblocks to Intimacy and Relationships

Intimacy and relationships can have special dynamics for people with bleeding disorders and for caregivers of a child with a bleeding disorder. This module explores ways to strengthen physical, emotional, social, intellectual and spiritual intimacy through targeted communication and behaviors to enhance relationships. It is ideal for those interested in attending individually or as a couple to learn tools for cultivating a rewarding, enjoyable connection with their partner.

Speakers:

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!

Is Hemophilia a Secret? Disclosure in a World Filled with Technology

Whether within friendships, romantic relationships, at school or in the workplace, an adult with hemophilia will confront the question of disclosing their bleeding disorder status many times over. Join us to learn techniques that will help you negotiate this process in the age of digital and social media.


Transcription of "Is Hemophilia a Secret? Disclosure in a World Filled with Technology"

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 balance, and what resou