Treatment & Care

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.

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.

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.

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.

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.

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.

¿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

Do you have a burning question to ask our panel of experts? This session will offer participants an opportunity to interact, engage, and ask thought-provoking questions to a panel of interdisciplinary healthcare providers in real time.

This session will discuss current treatment options for rare factor deficiencies and platelet dysfunctions. It will also provide practical tips about what information will foster an effective discussion with your hematology care provider about your best treatment plan.

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.

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.

2020 is the year that VWD guidelines will be announced. This will be an opportunity to learn, explore, and understand the new measures for treatment, diagnosis, and protocols.

Muchas familias y culturas tienen sus propios remedios caseros "especializados" para tratamientos y curas. Esta sesión explorará cuántos de estos remedios caseros a veces pueden causar daño y entrar en conflicto con el tratamiento. Many families and cultures have their own "specialized" home remedies and so-called cures. This session will explore how many of these home remedies can sometimes cause harm and interfere with treatment.

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.

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.

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.

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.

In this session, we will evaluate bleed presentation in children with bleeding disorders at 3 to 5 years of age, discuss educational tools and safety guidelines for caregivers, and analyze developmentally appropriate activities for children with bleeding disorders in this age group.

These are exciting times in hemophilia research, with many new treatment options on the horizon. Come learn about the latest results of various phases of clinical trials on gene therapy and other new treatment options to see what the future holds for the treatment of hemophilia.

Expanding your PT evaluation skills to include the unique considerations for women with bleeding disorders.

Given relatively limited literature specifically on return to physical activity after injury for people with bleeding disorders, many physical therapists may lack competence in developing tailored recovery plans and providing prudent guidance to patients and their families. We will consider and apply recommended guidelines for return to activity and sport, critically appraise existing return to activity evaluation tools and applications, and compare and contrast return-to-work evaluation tools and applications for people with bleeding disorders.

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.

Total joint replacements can be performed safely in people with bleeding disorders. In this session, we will address realistic expectations, possible complications, and potential outcomes of total joint replacement surgery in patients with bleeding disorders.

This session will take a deep dive into identification and management of acute to chronic iliopsoas bleeds. Is the psoas to blame for all hip pain?

Hemophilia is a uniquely challenging and sometimes perplexing condition for physical therapists to manage and treat. Physical therapists who see patients across the lifespan may manage conditions that range from athletic injuries to frailty. Clinicians often rely on reviewing limited evidence, consulting colleagues, and ultimately critical thinking and best clinical judgment to develop a management plan. This session will outline a framework for different scenarios seen in the clinic and look at six broad management schemes.

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.

What exactly is meant by individualized therapy? What might be the future treatment and quality-of-life implications for hemophilia patients? Learn more about this state-of-the-art approach to care, and how it could improve the health of a person living with hemophilia.

Transcription of "One Size Does Not Fit All: Individualized Therapy"

It is a reality familiar to most adults with hemophilia of a certain age:  repeated joint bleeds which subsequently causes joint deterioration, affecting everyday quality of life. But the story does not have to end there. Learn how prophylactic therapy can be used to halt the momentum of degenerative joint damage, decrease pain and help you regain mobility.

Transcription of "The Advantage of Prophylaxis for Adults with Joint Issues"

This pre-recorded session is a part of the virtual Rare Bleeding Disorders Conference. It will explain the diagnosis, symptoms and treatment options of both Glanzmann's Thrombasthenia and Bernard-Soulier Syndrome.

Speaker:  Jim Munn, BSN, RN

This pre-recorded session will explain the diagnosis, symptoms and treatment options of Factor 5 Deficiency, Combined Factor 5 and Factor 8 Deficiency and Factor Five Short, also known as east Texas Bleeding Disorder.

Speaker:  Sweta Gupta, MD

This pre-recorded session is a part of the virtual Rare Bleeding Disorders Conference. It will explain the diagnosis, symptoms and treatment options of Factor 13 Deficiency.

Speaker:  Suchitra Acharya, MD

This pre-recorded session is a part of the virtual Rare Bleeding Disorders Conference. It will explain the diagnosis, symptoms and treatment options of Factor 7 Deficiency.

Speaker:  Suchitra Acharya, MD

This pre-recorded session is a part of the virtual Rare Bleeding Disorders Conference. It will explain the diagnosis, symptoms and treatment options of Factor 11 Deficiency.

Speaker:  Danielle Nance, MD

This pre-recorded session is a part of the virtual Rare Bleeding Disorders Conference. It will explain the diagnosis, symptoms, and treatment options of Factor 10 Deficiency.

Speaker:  Peter Kouides, MD

This pre-recorded session is a part of the virtual Rare Bleeding Disorders Conference. It will explain the diagnosis, symptoms, and treatment options of rare platelet disorders.

Speaker:  Peter Kouides, MD

*ASWB

Moderators:

Kathaleen Schnur, LSW
Social Worker, Hemophilia Center of Western Pennsylvania

Alfredo A. Narvaez, Jr., MSW, LMSW
Social Worker, Louisiana Comprehensive Hemophilia Center
Tulane University Medical Center

Speaker:

Khalid Namoos
Medical Fellow, UCLA David Geffen School of Medicine

By the end of this session, the participant should be better able to:

*ASWB

Moderators:

Kathaleen Schnur, LSW
Social Worker, Hemophilia Center of Western Pennsylvania

Lucy Ramirez, MSW, LCSW
Clinical Social Worker, Rush Hemophilia & Thrombophilia Center

Speaker:

Alana Brunner, LCPC, NCC, CCMHC
Mental Health Therapist
St. Luke’s Psychiatric Wellness

By the end of this session, the participant should be better able to:

*ANCC

Moderator:

Tamara Bullock, RN-BC, BSN
Hemophilia Community Nurse, University of Iowa Hospitals and Clinics

Speakers:

Jeff Cornett, MSN, RN
Vice President of Research and Public Policy
Hemophilia of Georgia

Shanna Mattis, MPH
Public Health Associate and Social Worker
Hemophilia of Georgia Center for Bleeding and Clotting at Emory University

*ANCC

Moderator:

Kelly Tickle, MSN, APN, PPCNP-BC
Pediatric Nurse Practitioner, Children’s Healthcare of Atlanta  

Speaker:

Kalinda Woods, MD, FACOG
Assistant Professor, Department of Gynecology and Obstetrics
Emory University School of Medicine

By the end of this session, the participant should be better able to:

*ANCC

Speaker:

Khalid Namoos
Medical Fellow, UCLA David Geffen School of Medicine

By the end of this session, the participant should be better able to:

• Compare cannabis formulations and discuss the evidence for their potential use
• Discuss the evidence for clinical indications for cannabis use
• Describe the pharmacokinetics and physiological effects of cannabis 

*ANCC  

Moderator:

Jennifer Donkin, RN, DNP, CPNP, CFNP
Nurse Practitioner
Children's Hospital of Los Angeles

Speakers:

Sharon L. Littig, RN
Clinical Coordinator
Cardeza Foundation Hemophilia Center at Jefferson University

Penni J. Smith, MPA, BSN, RN-BC
Hemophilia/Hematology RN Coordinator
Utah Center for Bleeding and Clotting Disorders
Primary Children’s Hospital  

*ANCC

Moderator:

Kimberly Hurdstrom, RN, BSN
Hemophilia & Thrombosis Center, University of Colorado School of Medicine
University of Colorado Denver

Speaker:

Marilyn Manco-Johnson, MD
Director, Hemophilia & Thrombosis Center
Professor, Pediatrics Hematology-Oncology
University of Colorado School of Medicine
University of Colorado Denver

By the end of this session, the participant should be better able to:

*CME/ACPE

Moderator/Speaker:

Steven W. Pipe, MD, Faculty Chair
Professor of Pediatrics and Pathology
Laurence A. Boxer Research Professor of Pediatrics and Communicable Diseases,
Pediatric Medical Director, Hemophilia and Coagulation Disorders Program,
Director, Special Coagulation Laboratory,
University of Michigan
Ann Arbor, Michigan

Speakers:

*CME/ACPE

Moderator:

Stacy E. Croteau, MD, MMS
Assistant Professor of Pediatrics, Harvard Medical School Director, Hemophilia/VWD Program, Boston Children's Hospital Medical Director, Boston Hemophilia Center 
Dana-Farber/Boston Children's Cancer Center & Blood Disorders Center
Boston, MA

Speakers:

*CME/ACPE

Moderator:

Christopher E. Walsh, MD, PhD
Associate Professor of Medicine, Division of Hematology and Medical Oncology
Icahn School of Medicine at Mount Sinai
Director, Hemophilia Treatment Center, Mount Sinai Hospital
New York, NY

Speakers:

*ANCC

Moderators:

Sharon L. Littig, RN
Clinical Coordinator
Cardeza Foundation Hemophilia Center at Jefferson University

Jessica Pindilli, BSN, RN
University of Wisconsin Hospital & Clinics
UWHC Comprehensive Program for Bleeding Disorders

Speakers:

Maria Tovar-Herrera, RN-BC, BSN
RN Coordinator
Rush Hemophilia and Thrombophilia Center