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All Patients & Families

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

A Moment of Reflection

This recorded session was a part of the 2020 virtual Rare Bleeding Disorders Conference. This mid-week boost will explain the practice of meditation, with reflective meditation exercises woven throughout the presentation.

Speaker:  Jhon Velasco, MA, RYT300