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Our Virtual Symposium in August 2020 offered a variety of sessions for the bleeding disorders community. Many sessions were recorded and are available to view again in the virtual platform:

Watch On-Demand

Monday, 8/24

Note: These sessions took place on Monday, 8/24/2020. Content presented during industry-sponsored sessions was independent of HFA’s program and was presented by the sponsor.

Session Title General/Breakout Speaker(s) Session Description
Welcome session and Symposium Overview General Michael DeGrandpre and Carrie Koenig Welcome to Symposium! During this review, participants will learn the ins and outs of Symposium 2020 and accessing all of the amazing capabilities our virtual platform has.
Children’s Art Breakout –
Children’s
Room
Nannette Howard This family friendly session is a great way to take a break from bleeding disorders education and make some art! Learn about the artist Kandinsky and nonrepresentational art, and then try painting to music!
Yoga for Joint Health General Rachel Grant, 200-RYT, PRYT This one hour guided yoga practice will focus on gentle yoga poses and movement to loosen tension in the joint spaces.
Safety Summit Update General Sonji Wilkes, Miriam Goldstein, Nathan Schaefer The bleeding disorders community experienced an unexpected number of recalls and other product safety notices in 2019. These events were unsettling to many as they echoed tragedies of the recent past, showed gaps in the system that serves the community in the present day and highlighted a need to articulate standards that will serve the community as we enter into a new and uncharted era of gene therapy and other novel treatments. HFA and NHF partnered to convene  a jointly-sponsored Safety Summit (Washington DC) in January 2020. Learn more about findings from the Summit and what steps are next in order for the bleeding disorders community to remain vigiliant.
Making Medicare Work For You General Kathleen Holt With an aging bleeding disorders population, many are becoming eligible for health care coverage via Medicare. In this session, we’ll review fundamentals of Medicare and the specifics for indivudual living with a chronic condition. We’ll discuss the pitfalls to avoid and how to the get the maximum benefits from your coverage.
Hemophilia Breakout Session, Digital Awareness in a World of Anonymity Breakout –
Hemophilia
Michael DeGrandpre In a small, insular communities such as ours, people often occupy multiple roles — patient, pharmacy, nonprofit, caregiver and homecare just to name a few. As use of online services such as video conferencing, social networking and virtual meetings have skyrocketed, it’s important to keep track of who is who online. We’ll examine unique players with unique motives within our bleeding disorder community, as well as pose some questions designed to have you think critically about who you interact with online.
vWD Breakout Session, The Context and History of Bias in Healthcare Breakout –
vWD
Christie VanHorne, M.Ed, MPH With a look back in history, we better understand how medicine continues to leave the most marginalized people in our society sick and vulnerable. This eye-opening educational presentation explains why folks continue to experience bias in healthcare.
Rare Diseases Breakout Session, Self-Triage: Managing Bleeding & Pain Breakout –
Rare
Becki Burkowitz How much is too much? Do you know how to distinguish between symptoms that can be managed at home and when it’s time to speak with a doctor?
Inhibitors Breakout Session, What Triggers You: Combating Isolation Breakout –
Inhibitors
Gary McClain, Ph.D It’s not easy living with an inhibitor; even within the inhibitor community there are differences in health outcomes. Learn how to recognize the triggers of negative emotions, including depression, anxiety and PTSD. Our speaker will provide hands-on, interactive coping strategies and ways we can help each other combat isolation.
Symposium Keynote – Lindsay Vos: Sharing Her Journey General Lindsay Vos We welcome Lindsay Vos, patient advocate extraordinaire, to share her journey from diagnosis through battling Hereditary Hemorrhagic Telangiectasia, a malformation of blood vessels, which affects multiple organs of the body. Tune in to engage, support, and understand how Lindsay’s upbeat and positive attitude has helped her to navigate the management of her chronic disorder.


Tuesday 8/25

Note: These sessions took place on Tuesday, 8/25/2020. Content presented during industry-sponsored sessions was independent of HFA’s program and was presented by the sponsor.

Session Title General/Breakout Speaker(s) Session Description
Zumba General Wanda McClendon Get your body moving with this high-energy, dance-based exercise class to unwind and have some fun!
140 Countries, One Global Community: Help WFH Attain Treatment for All General Roddy Doucet and Jennifer Laliberte Bleeding disorders patients live all across the world. Learn more about the World Federation of Hemophilia and the work WFH does to reduce the inequities in diagnosis and access to treatment. See how WFH invests in the bleeding disorder community’s future and hear how you can get involved with their work.
Industry Session Sponsored by Novo Nordisk “The Path Forward: Importance of Healthy Lifestyles and High Factor Levels” General Tammuella Chrisentery-Singleton, M.D. and Daniel Martinez Our industry sponsor provides an opportunity to hear about the latest product and industry information. You will have an opportunity to ask questions and learn about the industry’s latest happenings. We will discuss the importance of healthy living in people with hemophilia, including weight management and explain how small changes, such as managing portion sizes and engaging in the right physical activities, can improve the overall health of people with hemophilia. Information on a new treatment option for hemophilia A will also be presented.
Session content is independent of HFA’s program, sponsored by Novo Nordisk Inc
vWD Breakout Session: Find Your Voice Breakout – vWD Christie VanHorne, M.Ed, MPH Through this interactive storytelling session, we use practical strategies to identify essential medical information to share with doctors and your medical team. Participants will learn how to best prepare for appointments and how to describe their symptoms effectively. We will practice learned concepts through reflective journaling exercises and storytelling.
Sesión de trabajo en español: Cuidado de la salud mental, un reto en familia Breakout Erika Bocanegra En esta presentación, hablaremos de la importancia de cuidar y mantener su salud mental como objetivo de toda la familia. Hablaremos a fondo de: Atención plena en familia: ¿Qué es la atención plena o la Atención Consciente? Hablemos de los sentimientos y las emociones difíciles Cómo fomentar la resiliencia y el bienestar en tiempos difíciles La importancia de las rutinas y la necesidad de realizar ajustes. Aprendiendo a ser más flexible como familia y cómo cultivar la flexibilidad.
Annual Awards Ceremony General Sharon Meyers Our annual recognition ceremony honors the service of special individuals who have gone above and beyond in support of the bleeding disorders community. We will have an overview of our exciting Final Night Event, reveal a fun photographic project we’ve been creating just for the bleeding disorders community, and make a special announcement about Symposium 2021!


Wednesday 8/26

Note:These sessions took place on Wednesday, 8/26/2020. Content presented during industry-sponsored sessions was independent of HFA’s program and was presented by the sponsor.

Session Title General/Breakout Speaker(s) Session Description
Celebration of Life General Carletha Gates, Ph.D., HS-BCP Lest we forget: we commemorate and pay tribute to the trailblazers of our community who have passed and allow family and friends a special time to celebrate our loved ones who lost their lives due to complications related to hemophilia and other bleeding disorders.
Who Hasn’t Had an Insurance Issue? General Moderator: Sonji Wilkes, Panelists: Miriam Goldstein, J.D., Mark Hobraczk J.D., MPA, Kimberly Ramseur J.D., MPH, Michelle Rice It’s inevitable — at some point in your bleeding disorders journey you are likely to face an insurance barrier. Now it is your opportunity to ask questions to a panel of bleeding disorders policy experts. We will share common insurance issues and the pathways to resolution.
HFA’s FIRST Project Update General Janet Chupka, BSN, R.N. We wrap up year one of a two-year award from the Patient Centered Outcomes Research Institute (PCORI) entitled Females In Research Sharing and Translation (FIRST) by sharing the work that has been completed thus far, including the results and findings of our listening sessions across the U.S. with women in the bleeding disorder community. We will present the work planned for the second year, including the formation of a Community-Based Research Network (CBRN), and how this network of community stakeholders can further efforts to increase women’s participation in research studies.
Industry Session Sponsored by Sanofi Genzyme “How Often Do You Use Your Joints?” General Physical Therapist Cindy Bailey and Tanya Stephenson Our industry sponsor provides an opportunity to hear about the latest product and industry information. You will have an opportunity to ask questions and learn about the industry’s latest happenings. Whether you’re going about your day or doing the things you love, you may not realize how much you rely on your joints. Taking care of your bleeds and joint bleeds play an essential role in managing hemophilia A. Join Community Relations and Education Manager Tanya Stephenson and physical therapist Cindy Bailey as they share their insights into what it takes to care for your joints.
Session content is independent of HFA’s program, sponsored by Sanofi Genzyme.
Barrier to Care: The Impact of Accumulator Adjuster Programs General Stephanie Hengst Accumulator adjuster programs are increasingly worrisome for the bleeding disorders community. AAP’s are when a health insurer can exclude manufacturer copay assistance amounts when calculating a patient’s overall deductible or out-of-pocket maximum. As a community, we must advocate to decision-makers and educate them that this practice results in higher out-of-pocket costs and causes a serious barrier to access to care. Learn more about how your voice can be heard!
Journey to Healthier Joints General Ann LeWalk, Bleeders of the Great Northwest, Activity Challenge Winners representing Hemophilia Foundation of Oregon, now called, Pacific Northwest Bleeding Disorders Are you interested in increasing your activity level, and in turn, improving your joint health? This panel of Blood Brothers is eager to share their experience participating in HFA’s 2019 Best of You: Journey to Healthier Joints men’s activity challenge. The Bleeders of the Great Northwest are committed to increase your knowledge and awareness of safe physical activities for people with bleeding disorders and how to build a team, using competition to improve joint and overall health.



Thursday 8/27

Note: These sessions took place on Thursday, 8/27/2020. Content presented during industry-sponsored sessions was independent of HFA’s program and was presented by the sponsor.

Session Title General/Breakout Speaker(s) Session Description
Bodyweight Bootcamp General Jonathan Blake, Certified Personal Trainer No equipment is required for this calorie blasting workout — a 45-minute bodyweight workout with Coach John Blake to improve balance, increase mobility, build core strength and lay the foundation for a healthy mind, body and spirit. All ability levels are welcome!
The Fight for Health Equity General Panelists: Kelly Cribbs, Shellye Horowitz, Manuel Lopez, Dr. Robert Sidonio; Facilitator: Michael Robinson Your access to health care and positive health outcomes should not be tied to your race, religion, gender, sexual preference, age or where you live. However, it’s the reality for many in the bleeding disorders community. We’ll hear from our speaker and a panel of patients who have faced disparities and explore mechanisms to combat and eliminate gaps in care.
Gene Therapy Research: Understanding the Science Sponsored by BioMarin General Guy Young, MD; Director, Hemostasis and Thrombosis Program at Children’s Hospital Los Angeles Have questions about gene therapy research?
Learn about the goals of gene therapy research, possible risks and eligibility criteria from a leading expert, Guy Young, MD; Director, Hemostasis and Thrombosis Program; Children’s Hospital Los Angeles.
This interactive live program will answer questions about gene therapy research, including:
• How gene therapy research is designed to work
• What different types of gene therapies are being researched?
• Why are some people eligible for gene therapy trials while others are not?
No gene therapies have been approved for hemophilia A or B or been determined to be safe or effective.
Terapia Física y estilos de vida saludables Breakout Dr. Edwin Porras Conozca lo que dice la ciencia sobre los trastornos de sangrados y el ejercicio y sobre las técnicas de autocontrol, y discuta los cambios saludables en el estilo de vida que pueden ayudar a reducir la frecuencia de daños y severidad de sangrados . El objetivo de esta sesión es capacitar a los pacientes para mejorar su calidad de vida.
Mental Health During a Time of Crisis Breakout Gary McClain, Ph.D. We are living in challenging times and many of us are now asking how to move forward and to create much needed and lasting change. This session addresses these concerns from a mental health perspective with guidance on having honest conversations, helping children to talk about what happened, and for families to take constructive action.



Friday 8/28

Note: These sessions took place on Friday, 8/28/2020. Content presented during industry-sponsored sessions was independent of HFA’s program and was presented by the sponsor.

Session Title General/Breakout Speaker(s) Session Description
Yoga to Help Relieve Pain, Anxiety and Stress General Rachel Grant, PRYT, 200-RYT Join us for a slow and relaxed yoga flow to get you in a calm and relaxed state.
On the Horizon General Moderator: Lori Long Panelists: Paul Limberis R.Ph., David Clark Ph.D., Lisa Hensley, Ph.D. We will discuss where we’ve been and where we’re going with respect to treatments and therapies for bleeding disorders with a panel discussion. Each panelist will present information on topics such as our history, current treatments and emerging treatments and attendees will have an opportunity to submit questions to be answered by presenters.
Living with Hemophilia A, Sponsored by Takeda General Gavin Roach, MD, MS, Luis, Hemophilia A Patient Be inspired by members of the Hemophilia Community through our educational symposium.
Welcome to the Bleeding Disorders World: Now What? Breakout Sue Geraghty, R.N., M.B.A. Welcome to the Bleeding Disorders World! The phrase that no parent has ever enjoyed hearing. Learn who’s who in at an HTC, how to make the most of your clinic visit and where to find trusted sources of information. Sue Geraghty, R.N. M.B.A., former HTC nurse coordinator, will also share some of her experiences working with new bleeding disorders parents.
Wounds That Don’t Bleed Breakout Jeffrey Karst, Ph.D. As parents of children with bleeding disorders, we are in tune with all wounds that bleed. There are times when a child has a wound that doesn’t follow typical bleeding disorders style. Parents will learn to identify common mental health disorders in children and explain the signs and symptoms of more serious mental health issues. Attendees will also learn about valuable resources to support parents of children either diagnosed or seeking a diagnosis of a wound that doesn’t bleed.



Saturday 8/29

Note: These sessions took place on Saturday, 8/29/2020. Content presented during industry-sponsored sessions was independent of HFA’s program and was presented by the sponsor.

Session Title General/Breakout Speaker(s) Session Description
Back to School: How to Advocate for Your Child with a Bleeding Disorder Breakout – Families Juliana Bloom, Pediatric Neuropsychologist (Ph.D.) Life during a pandemic is full of challenges. School during a pandemic is even more challenging. Dr. Juliana Bloom will review basic school advocacy protections for children with a bleeding disorder and will also share how to find balance in managing school expectations during this pandemic. She will share how to best work with school systems to continue to provide the outlined appropriate modifications and accommodations your child may have.
Managing Reproductive Tract Bleeding Blood Sisterhood Breakout Session Breakout – Blood Sisterhood Sarah O’Brien, M.D., MSc From menarche to menopause and beyond, managing reproductive tract bleeding is a tricky business. Dr. Sarah O’Brien, M.D., shares her knowledge about taming the tides.
Telehealth Now … And Forever Blood Brotherhood Breakout Session Breakout – Blood Brotherhood Christie VanHorne, M.Ed., MPH With clinics and check-ups moving online during the COVID-19 crisis, many Blood Brothers and Sisters are left with questions about telehealth. How do I prepare? Will I get the same level of care I’m used to? Will this function be accessible after the crisis has passed? We will look into the best strategies to prepare for your telehealth visits, as well as do our best to forecast if this is a service we can expect to stick around.
Family Cooking Demonstration Families Breakout Session Breakout – Families Mike Hargett Looking for a healthy, quick, family meal in 30 minutes or less? Join Blood Brother and chef Mike Hargett during this live cooking demonstration! Mike will be demonstrating how to make a meal for the whole family using common pantry ingredients and will also share a bit of his experience with hemophilia and his career path.
Back to School: How to Advocate for Your Child with a Bleeding Disorder: Roundtable Discussion Breakout – Families Dr. Juliana Bloom Pediatric Neuropsychologist (PhD) Education during a global health pandemic can be overwhelming. Please join Juliana Bloom, PhD in a roundtable discussion to process this new normal.
Industry Session, Sponsored by Bayer “My Journey to Jivi” General Tiago Dias, Ryan Moulton, Juan Pablo Lopez Padilla, Stacey Mollinet Our industry sponsor provides an opportunity to hear about the latest product and industry information. You will have an opportunity to ask questions and learn about the industry’s latest happenings. Join Bayer for a virtual “My Journey to Jivi” event to learn more about Jivi antihemophilic factor (recombinant) PEGylated-aucl. Special guest speakers from the community will share stories about their life experiences and transition to Jivi, a treatment option from Bayer. You’ll also learn more about the science behind Jivi, including results from the Jivi extension study.
Session content is independent of HFA’s program, sponsored by Bayer.

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