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Webinars & Other Recordings

HFA hosts webinars and Google Hangouts on a variety of topics throughout the year. Be sure to register for our mailing list to stay informed on upcoming opportunities for you to learn in the comfort of your own home! 

You’ll find recorded webinars grouped by topic below.


Pain Management Webinar_Image Webinar: Pain Management & Opioid Dependency: A pain management doctor and a psychiatrist address solutions to pain management as well as the growing concern of opioid use across the country. In addition two personal stories from members of the bleeding disorders community shed light on living with pain and dependency.
 Tackling Pain & Anxiety_IMAGE Webinar: Tackling Pain & Anxiety: Parents as Coaches for Coping: This webinar provides techniques for parents to help their children cope with pain and anxiety, and how to empower them to voice their concerns. Parents will also learn tried and true tips to help their children manage pain and how to make infusions and other procedures less stressful for the entire family.
Ouch Does It Always Have to Hurt_IMAGE Webinar: Ouch –Does it Always Have to Hurt: Patients living with a bleeding disorder often list pain as one of their most challenging medical concerns. The impact of chronic or acute pain on general quality of life can be significant for many, but how do you identify pain in the first place and how much pain should you tolerate before you begin treatment?
youngadult_painhangout Young Adults Hangout: Creative Strategies for Coping with Pain: In this Google Hangout interactive forum, four young adults in the bleeding disorders community shared how they have managed their pain by using therapeutic and non-pharmacological ways via art, comedy, cooking, and other physical activities/wellness practices. 
ManagingArthritis_Webinar_IMAGE Webinar: Managing Arthritis with Hemophilia: This webinar is designed for adult men living with hemophilia and other bleeding disorders who experience joint damage and arthritis issues. In this presentation, you will learn about preventative techniques and treatment interventions in the management of arthritis.


Childcare/School Issues

Back to School Webinar_Robinson_IMAGE Webinar: Back to School: In this webinar, Dr. Joby Robinson, who has more than 20 years experience as a teacher and trainer, shared information about federal laws specific to bleeding disorders, resources, and proven strategies to help your child/children have a successful and safe school year!
YA Hangout: Back to School Young Adults Hangout: Back to School, Navigating College & Grad School from A to Z: Heading to school in the fall? College is an exciting and stressful time for students. HFA can help! Our summer young adult’s hangout features speakers who have successfully navigated the higher education process, including college and graduate school. We will discuss everything from applying to schools, scholarships, and day-to-day life at school. Panelists will share tips on gaining independence and practicing self-advocacy in a college setting.!


Insurance Issues


Webinar: Insurance & Financial Planning: In partnership with HFA’s Blood Brotherhood & Families Programs, HFA’s Outreach Team presented an overview of insurance coverage, the Affordable Care Act, patient assistance programs, and saving for medical expenses. We also explained ABLE accounts, a new form of savings account available to some individuals with disabilities. With ABLE accounts, people who meet certain disability criteria can accumulate savings without losing their eligibility for public health and Social Security benefits.
TierWhat_Image Webinar: Understanding Specialty Tiers: Treatment of hemophilia ranks among the most expensive chronic conditions in the US, averaging $150,000 to $350,000 per patient annually! To add insult to injury, if clotting factor was placed into a ‘specialty tier,’ patients could be responsible for 25-33% of the cost.
Decoding the Documents_Image Webinar: Decoding the Documents: Let’s face it: understanding everything that is in your insurance policy is no easy task. From understanding how prescriptions are covered, to figuring out where to get your factor, you almost need a specialized degree just to read it.
 What to Expect ACA_Image Webinar: What to Expect from the ACA in 2014: HFA’s policy team and experts at Families USA talk about the important changes occurring in 2014 under the Affordable Care Act (ACA), crucial dates/deadlines to remember, and what it all means for the bleeding disorders community.
FallChecklist_Image Webinar: Fall Checklist: Health Insurance: In this webinar, HFA’s Advocacy and Government Relations team walks you through the ins and outs of the health insurance marketplace by providing you with: helpful ways to evaluate different insurance plans during open enrollment period, proven techniques to make informed decisions, and how to file an appeal or grievance when a service/payment is denied.
SupremeCourtRuling_IMAGE Webinar: Supreme Court Ruling: This webinar, held on July 11, 2012, discusses the U. S. Supreme Court’s ruling on the Affordable Care Act.
ACA for People with Hem_IMAGE Webinar: Affordable Care Act Protections for People with Hemophilia: Learn updates from Families USA about the Affordable Care Act (ACA), tips on how patients with a chronic condition can enroll in coverage, information about insurance marketplaces, and ways to better work with essential community providers.
ThreatstoMedicaid_IMAGE Webinar: Threats and Opportunities to Medicaid: This webinar addressed the importance of the Medicaid program, the changes states are making to their programs, and the potential for states to expand their program under the Affordable Care Act.


Basics of Bleeding Disorders

It's Genetic Baby_WebinarImage Webinar: It’s Genetic, Baby!: Having a child is overwhelming. Having a child that could possibly have a bleeding disorder is even more overwhelming! In the ever changing bleeding disorder landscape, it is comforting to be prepared. Meg Bradbury, genetic counselor, presented an overview of bleeding disorder genetics, genetic counseling and testing options. Meg also shared the benefits to genetic counseling.
Diagnosis of VWD Webinar_Image Webinar: Diagnosis of vonWillebrand Disease: Challenges & Opportunities: In this webinar, Dr. Connie Miller of the Centers for Disease Control describes the symptoms of vWD and the tests required for its diagnosis. She discusses the variability of test results in different population groups and describes newly developed tests. This webinar was presented by:
Division of Blood Disorders
National Center on Birth Defects and Developmental Disabilities
Centers for Disease Control and Prevention. Hosted by:
Hemophilia Federation of America


Health, Wellness & Physical Fitness

To Play or Not to Play Webinar_Graphic Webinar: To Play or Not to Play: That is the question. There is so much conflicting information about whether a child with a bleeding disorder should play sports. Hear from our resident experts, those with bleeding disorders and parents who made the choice to allow their child to participate in sports. The panelists share their experiences and provide useful insight on preparing for sports.


Treatment Issues

 MAKING STRIDES_WEBINAR IMAGE Webinar: Making Strides Toward Improving Care of Women and Girls with Bleeding Disorders: This Webinar will provide an introduction and an overview of the Foundation for Women & Girls with Blood Disorders (FWGBD) as well as an overview and update regarding it’s WGBD Clinics of Excellence Directory project. The Directory identifies HTCs that offer services for women and girls and those that have specific Women & Girls Bleeding Disorder (WGBD) Clinics. The Webinar will also highlight one example of a clinic of excellence, The Young Women’s Hematology Clinic at Nationwide Children’s Hospital in Columbus, Ohio, and will describe how the providers at this clinic are working together to improve the care for young women with bleeding disorders.
 Gene Therapy Webinar_hemophilia Webinar: ASGCT & HFA: Gene Therapy in Bleeding Disorders – Hemophilia: In this webinar, Dr. Mark Kay covers basic information on the history of and the latest advances in gene therapy for bleeding disorders, specifically for hemophilia. He provides a brief history of previous human gene therapy trials for hemophilia and discusses the differences between trials. Dr. Kay also addresses potential challenges of gene therapy for hemophilia.
 ASGCT Webinar Gene Therapy Basics Webinar: ASGCT & HFA: Gene Therapy Basics: American Society of Gene and Cell Therapy (ASGCT) and Hemophilia Federation of America (HFA) have partnered to produce a series of webinars explaining basic concepts in hemophilia gene therapy, targeting hemophilia patients, their families and friends. A recent survey of disease foundations indicated a real unmet need for unbiased, honest and patient-directed educational materials to help patients understand how gene therapy might impact now and in the future on their disease.
 Men's Sexual Health Webinar Title Slide Webinar: Men’s Sexual Health: With advances in treatment and care, men with bleeding disorders are living longer and more productive lives. However, if you are an aging man with a bleeding disorder, it is important to keep other chronic health risks in check to maintain good health and thwart the onset of other chronic conditions, such as heart disease or diabetes. In this webinar, attendees will learn about the most common sexual health issues facing men today, why sexual health issues are an overall important health marker, and ways men can start improving their health and preventing other chronic health conditions.
 Women and Girls with BD: Challenges in Diagnosis and Management Webinar Webinar: Women and Girls with Bleeding Disorders: Challenges in Diagnosis and Management: Over the last decade, there has been increasing awareness among healthcare providers that adolescent girls and women with bleeding symptoms should be evaluated for congenital bleeding disorders, such as von Willebrand disease (VWD), hemophilia carrier status, qualitative platelet disorders and rare bleeding disorders. The number of women and girls diagnosed with bleeding disorders and cared for at federally supported Hemophilia Treatment Centers grew by nearly 350% in the decade after 1990 and continues to grow exponentially. Unfortunately, diagnostic delays and misdiagnoses in this population are still common.

In a U.S. Centers for Disease Control and Prevention (CDC) survey in 2004, women with VWD reported an average of six bleeding symptoms before receiving a diagnosis of VWD. This study also demonstrated an average time of 16 years from the onset of the first bleeding symptoms to clinical recognition of a bleeding disorder. Gender-specific bleeding assessment tools have been created to help with the rapid identification of women and girls who are at highest risk for bleeding disorders and, therefore, should receive diagnostic testing. However, hematologists, emergency department physicians, and ob-gyn providers continue to lack awareness of the usefulness of these assessment tools.

Prophy for Protection_Image Webinar: Prophy for Protection: As parents we hear and see that prophylaxis is best but, do we really understand the benefits of it? What happens to our joints if we do not adhere to a prescribed prophylaxis regimen? Joint bleeds can be overwhelming and difficult to understand. In this webinar, presented by Kerry Vela, pediatric and adult physical therapist at the John’s Hopkins Hemophilia Treatment Center, and hosted by HFA’s Families Program delved into the process and benefits of prophylaxis. Listen to learn what happens to a joint after repeated bleeds and how to discuss the risks and benefits with our children.
 Evidence Based Guidelines on Hemophilia Care_Webinar IMAGE

Webinar: Evidence-Based Guideline in Hemophilia Care: A Model for Rare Disease Guidelines: The optimal care delivery model for people with hemophilia is integrated care. This approach requires a high degree of collaboration and communication by all healthcare team members to establish a comprehensive treatment plan, and is supported by a number of national and international guidance documents. However, the effects of integrated care on patient outcomes have not been studied thoroughly. The National Hemophilia Foundation (NHF) initiated the development of an evidence-based clinical practice guideline to identify best practices in delivery of care for people with hemophilia in order to improve patient outcomes.

In this webinar, presenters will describe the research that formed the basis for the guideline, and how the guideline will be put into action, including
• The main findings of the study;
• How these findings were used to develop the guideline;
• The clinical implications of the guideline; and
• How this guideline will be used in the U.S. Hemophilia Treatment Center Network to improve care for people with hemophilia.

On the Horizon Webinar Screenshot Webinar: On the Horizon: Emerging Therapies for Bleeding Disorders: It is an exciting time in the bleeding disorders community with many novel therapies emerging on the treatment landscape. It can be difficult to keep track of these many therapies, know how they differ from each other, and ultimately, the impact they can have on the bleeding disorders community. This webinar, hosted by HFA’s Blood Brotherhood & Families Programs, breaks down the highlights of these emerging therapies to make you a more informed advocate in the future of your treatment.
Webinar HCV Current Treatment Access Issues Webinar: Hepatitis C: Current Treatment, Current Access Issues:  It is a time of immense hope and positivity for the bleeding disorders community living with the Hepatitis C Virus (HCV). After years of ineffective treatments with negative side effects, therapies showing positive results are now available. However, the community is currently facing access issues leaving some without treatment.
CDCWebinar_HCV Webinar: Update on Treatment of Hepatitis C in People with Hemophilia: In this webinar from the CDC’s National Center on Birth Defects and Developmental Disabilities (NCBDDD), Dr. Ragni provides a review of the natural history of HCV infection in people with hemophilia and discusses the related risks and their management, including increased rates of bleeding episodes, hepatocellular cancer, and liver transplantation. She also provides an update on promising new therapies designed to eliminate the virus from infected individuals. This webinar was presented by:
Division of Blood Disorders
National Center on Birth Defects and Developmental Disabilities
Centers for Disease Control and Prevention. Hosted by:
Hemophilia Federation of America
ChronicKidney_IMAGE Webinar: Understanding Chronic Kidney Disease: This Blood Brotherhood webinar addressed chronic kidney disease and the complications in patients with HIV and Hepatitis C. Dr. Aleksandra De Golovine from the Division of Renal Diseases at the University of Texas discussed the current treatments, risks, and medical advancements for this condition facing the aging hemophilia patients.
ManagingBleedingWomen_IMAGE Blood Sisterhood Webinar: Managing Care for Women with Bleeding Disorders: It is important and vital that women who are symptomatic carriers, have hemophilia, von Willebrand Disease (vWD), or other rare clotting conditions have a voice in the bleeding disorders community. During this Blood Sisterhood webinar, Dr. Robert Sidonio discussed treatment and management options for women with rare bleeding disorders and shares the results of recent studies that he just conducted.
Doctor Doctor_ER Webinar_Image Webinar: Doctor, Doctor, Give Me the News: Communication in the ER: At some point in your bleeding disorders journey, you will likely need to visit an emergency room. While those visits can’t be anticipated, patients and caregivers can plan ahead by proactively thinking about how an emergency room works and how to effectively communicate your child’s needs and their bleeding disorder.
GoogleHangout_HealthyBodies_IMAGE Young Adults Hangout: Healthy Living with A Bleeding Disorder:  We all know we need to do it; move our bodies more and fill our plates with fruits and vegetables. However, proper nutrition, combined with safe and effective exercise, is especially important to maintain good health in people with bleeding disorders. Another incentive for people with bleeding disorders to adopt a healthier lifestyle? Healthier bodies bleed less! Join HFA on our upcoming Young Adult Hangout to hear the experiences of young adult men and women living with bleeding disorders on how they maintain a healthy lifestyle
BSIS_FWGBD_Webinar_2016-05-19 Webinar: Diagnosis in 16 Years – A Woman’s Health, Public Health Crisis:  Quality clinical services, specifically for women and girls with bleeding disorders, are key to accurate diagnosis, reducing complications and diminished quality of life, and improving women’s health. The Foundation for Women & Girls with Blood Disorders (FWGBD) is working to ensure proper diagnosis, optimal management and treatment of women and girls with blood disorders through special initiatives with the 135 federally funded Hemophilia/Hemostasis and Thrombosis Treatment Centers (HTCs) across the country. This webinar provides an introduction and overview of WGBD Clinics of Excellence Initiative and Directory Project. The Directory identifies HTCs that offer services for women and girls, and those that have specific Women & Girls Bleeding Disorder Clinics.
Sugar & Spice Webinar_Screenshot Webinar: Sugar & Spice and Everything Nice: Raising girls is a tough job. It is an even tougher job when your daughter has a bleeding disorder. Hear from parents and women and learn how they’ve tackled some of the biggest challenges women and girls face in the bleeding disorder community. Panelists discussed the difficulties they have faced, and how they’ve remained resilient when facing these challenges.


Family Issues and Relationships

YAHangoutRelationship_Image Young Adults Hangout: Dating, Relationships, & Bleeding Disorders: This hangout featured young adults with bleeding disorders and their significant others personal experiences of dating and building/maintaining healthy relationships.
stopsiblingquibbling_IMAGE Webinar: Stop Sibling Quibbling!: In this webinar, presenter Diane Horbacz reviewed the social and emotional stages of childhood development, addresses common issues siblings face, and gives tried and true tips for parents on how to deal with children living with a bleeding disorder.
NurturingCoupleRelationships_IMAGE Webinar: Nurturing the Couple Relationship: In this webinar, Dave Robinson, PhD, discussed key concepts that will allow you to work better together with your significant other, build a firm foundation for your children, and how to maintain a healthy relationship when a bleeding disorders affects the family dynamic.

Career and Future Planning

YAHangout_PlanFuture_IMAGE Young Adults Hangout: Planning for the Future: This Google Hangout provided tips for 18-35 years olds living with a bleeding disorder on how to create a budget, ways to live within your means, tricks to build an emergency fund, how to use credit cards responsibly, effective ways to pay off existing debt, how to navigate through health insurance terminology, and much more!
HiHo_Image Webinar: Hi Ho, Hi Ho, It’s Off to Work I (Don’t) Go: During this webinar, speakers from the U.S. Equal Employment Opportunity Commission and Department of Labor explained what the Family Medical Leave Act (FMLA) and the Americans with Disabilities Act (ADA) laws are, and how you as a parent can be eligible to use these benefits when you miss work due to your child’s bleeding disorder.
PlanforRoadAhead_IMAGE Webinar: Planning for the Road Ahead: In this webinar, Attorney Donnie Akers, and General Counsel for HFA, gave an informational session about legal planning, health care directives, and laws surrounding medical records specific to bleeding disorders and hemophilia.
YA Hangout_Employment in BD community ‪Young Adults Hangout: Maintaining Boundaries, Employment in the Bleeding Disorders Community: Finding and securing employment can be exciting but often stressful for many young adults. For those living with bleeding disorders, the challenges are heightened. A position providing insurance benefits,  an employer who upholds and respects your rights as a person living with a chronic disorder, and job flexibility, are not just ‘nice to have,’ but absolutely necessary. Due to many young adults with bleeding disorders


Public Policy Issues

State of States Webinar 2016_Image The State of the States 2016: Where Health Care Legislation Stands around the Nation: As the Affordable Care Act continues to unfold, many member organizations are working to pass legislation and work with their states to further protect patients. From specialty tiers to effective and speedy prior authorization practices and network transparency legislation, the bleeding disorders community has so much at stake when state legislatures convene in January 2017.
DearAddyBiosimilar_IMAGE Dear Addy: What’s a Biosimilar?: Learn more about biosimilars, and what they mean for patients with hemophilia, von Willebrand disease (vWD), and other bleeding disorders at HFA’s advocacy page.
TalktoLegistlator_IMAGE Webinar: How to Talk to Your Legislator: There is no better way to effect good policy than by sharing your story with your state and federal legislators!
StateoftheStates_IMAGE Webinar: The State of the States – Where Healthcare Legislation Stands Around the Nation: As the Affordable Care Act enters its second year, many member organizations are working to pass legislation and work with their states to further protect patients. From specialty tiers to effective and speedy prior authorization practices, the bleeding disorders community has so much at stake when state legislatures convene in January.
building coalitions_image Webinar: Building Coalitions At Home: As state legislatures look more and more at issues like the high cost of specialty drugs and prior authorization practices, it is important to work together with other patient advocacy groups that are experiencing the same issues to make the patient voice as strong as possible


Stress Management & Other Mental Health Issues

cantfightfeeling_Image Webinar: I Can’t Fight This Feeling: Anxiety & Depression: This webinar explored how anxiety can affect the bleeding disorders patient and the caregiver, discussed the role of Post Traumatic Stress Disorder (PTSD) and Acute Stress Disorder (ASD) can have on those living with a chronic condition, and offered effective ways to cope with stress.
dazedconfused_image Webinar: Dazed & Confused – Coping with Stress: In this webinar, Dr. Gary McClain, PhD looks at ways to recognize stress, both good and bad, and how to manage it when your also living with a bleeding disorder
BeyondBlue_Hangout Young Adults Hangout: Beyond Blue: Managing Depression & Anxiety: This Young Adults Hangout featured a licensed therapist/patient advocate that provided his expertise on:• The correlations and distinctions between depression and anxiety
• The prevalence of depression and anxiety amongst young adults
• The impact of chronic disorders on mental health
• Ways to incorporate self-care into your daily routine


Aging and Transition Issues

YAHangout_Transition_IMAGE Young Adults Hangout: Transitioning to Adulthood: By watching this hangout, you will learn your rights as an employee with a bleeding disorder, how others have disclosed their disorder to others, tips for working with your college or university and how to navigate insurance issues.



Screen Shot 2017-06-20 at 2.10.04 PM Webinar: The Present Leads to the Future: The road leading to the future of inhibitor eradication and treatment goes through the present-day and the research that is being done by the medical and research communities.

Dr. Duc Tran gives patients and families a brief review of present day inhibitor management and an extended look into current trials relevant to the inhibitor community, as well as a glimpse into some preliminary research not in clinical trials.

There’s sure to be something new to you in this webinar!

Screen Shot 2017-05-04 at 11.57.06 AM Webinar: CDC Inhibitor Updates: Road to Prevention: This webinar provided an overview of the vital role of the CDC in understanding and preventing inhibitors. Attendees of this webinar learned about the CDC’s Hemophilia Inhibitor Research Study (HIRS) and its key findings. Participants will also learn how those key findings, including improved methods to test for inhibitors, were used to develop “Community Counts,” CDC’s Registry for Bleeding Disorders Surveillance.
InhibitorWhatYouNeed_Image Webinar: Inhibitors—What You Need to Know: It’s the most feared complication currently in hemophilia—the development of an inhibitor. In this webinar, hear a basic overview of what it means to have an inhibitor, the risk factors for developing one, current treatment options, and how it can affect and change a family’s everyday life.
YAHangoutInhibitor_IMAGE Young Adults Hangout: Living with an Inhibitor: A Young Adult Perspective: While the quality of life for people living with bleeding disorders have dramatically improved over the years thanks to safe treatments and comprehensive care, many in the community have developed inhibitors—a serious complication of hemophilia.




YAHangout_Travel_IMAGE Young Adults Hangout: Traveling Safely & Bleeding Disorders: During this Hangout, young adults with bleeding disorders shared their experiences of traveling abroad in an effort to help others understand that having a chronic should not prevent them from exploring the world.


Personal Advocacy Issues – How to Get Invovled

 Screen Shot 2017-08-08 at 1.41.04 PM
Young Adults Hangout: Reconnection with the Bleeding Disorders Community:  Are you a young adult (18-30 years old) in the bleeding disorders community who is less involved now than you were as a teen or kid? Do you want to reconnect? This Young Adult Hangout includes a conversation with other young adults who came back to the bleeding disorders community after stepping away. A panel of speakers shared their experience reconnecting locally and with the national organizations. Tune in to learn about resources available within the bleeding disorders community!
 HowtoadvocoteForYou_Hangout_Image Young Adults Hangout: How to Advocate for YOU: Advocacy is at the heart of our mission. Listen to the recording to learn how young adults can advocate for themselves and the #bleedingdisorders community, including how to navigate insurance for first time users, through first-hand perspectives from community members who have successfully navigated health coverage and care. The panelists also spoke about advocacy as it relates to work, politics, and social media.
YAHangout_Future_Image Young Adults Hangout: Future of the Bleeding Disorders Community: As a young adult in the bleeding disorders community, you are a future leader and your voice is important! We want your input on how HFA can best meet your needs. Learn what resources and programs are currently available for young adults in the community and help us brainstorm new and innovative ideas for education and support. Whether it be through networking, mentorships, or anything else — we want to hear from you!
Capacity Building_Image Webinar: Capacities Needed for Effective Consumer Advocacy:  Learn more about the traits needed to be a good advocate.
WordsthatWork_IMAGE Webinar: Messaging, Words that Work: Learn how to best get your message across when advocating for those with bleeding disorders.
Empowering Women_IMAGE Webinar: Empowering Women with Bleeding Disorders: In this Blood Sisterhood webinar, The Foundation for Women and Girls with Bleeding Disorders presented about their organization’s mission, reviewed studies they have conducted, and provided effective ways for women to better collaborate and communicate with their provider.
whatdidiagree_image Webinar: What Did I Agree To?: Know your rights and learn about informed consent.
selfadvocacywomen_image Webinar: You Can Do It – Self Advocacy Tips For Women: This webinar was hosted by our Blood Sisterhood and Advocacy team and provided communication strategies for women with bleeding disorders.
onlineadvocacy_image Webinar: Keys to Successful Online Advocacy: This webinar provided practical tips on how to advance your advocacy agenda through the web and social media.
Clinical Trials Right For You Webinar_Image Webinar: Big Decisions – Are Clinical Trials Right for You?: As the market for new treatments for the ‪‎bleeding disorders‬ community continues to grow, more clinical trials are open to patients and their families than ever before. While participation in these trials is important to medical and scientific advancement, not all clinical trials are right for every patient. This HFA Families webinar will include an explanation of the clinical trial process and an overview of the different phases of clinical trials. Participants will learn where to find reliable information and how to weigh the pros and cons of a trial that they may be interested in.
 voices of 5000+CDC webinar_Screenshot Webinar: Voices of 5,000+ Patients: The First National Survey on Experience of Care at US HTCs: In this webinar, the panelists described the strategies used to develop and pilot a standardized survey of patient satisfaction that was administered to HTC patients, and explained management and analysis of the data collected from respondents. Presenters described key national results and showed how regional differences in participant demographics and diagnoses influence patient satisfaction. This webinar was presented by:
Division of Blood Disorders
National Center on Birth Defects and Developmental Disabilities
Centers for Disease Control and Prevention. Hosted by:
Hemophilia Federation of America



 Screen Shot 2017-09-29 at 8.09.43 PM

The Community Having Opportunity to Influence Care Equity (CHOICE) Project, in partnership between the Centers for Disease Control and Prevention and Hemophilia Federation of America, surveyed people with bleeding disorders who do not receive care at U.S. federally funded hemophilia treatment centers (HTCs). The objective of this survey was to characterize health status and outcomes in order to better estimate disease consequences in this population.
In this webinar, Ms. Owens will present an overview of the CHOICE project and the strategies used to integrate the bleeding disorders patient perspective into the development of the survey. She also will describe the survey methods and discuss how the survey was promoted within the bleeding disorders community. Lastly, she will present preliminary data describing the characteristics of the survey respondents and share findings on treatment and healthcare utilization

 Screen Shot 2017-09-26 at 1.01.30 PM

How Do I Participate in PCOR & CER As a Community Member? In this webinar, Julie Kennedy Lesch, MPA from the Patient-Centered Outcomes Research Institute (PCORI) addressed the importance of patients and caregivers’ roles in patient-centered outcome research and discuss how patients and caregivers can participate in research opportunities. This webinar was moderated by Ann-Grete Tan, a bleeding disorders community member with a 16 year old son with severe hemophilia A and interest in effective research impacting the bleeding disorders community.

 Research 101: What are PCOR & CER Webinar

Research 101: What is PCOR & CER: This webinar provides a basic understanding of patient centered outcomes research (PCOR) and comparative effectiveness research. Learn how to participate in research from idea to data publication.



History Hero Small Young Adults Hangout: Honoring Our Past, Building Our Future: Building on the momentum of HFA’s interactive timeline of the historical journey of bleeding disorders, this young adult hangout will feature an overview of the history of bleeding disorders from the 1930s through present day highlighting the milestones, triumphs, and tribulations of the bleeding disorders community  Members of the bleeding disorders community will share their stories of what they have learned from the history, how it has impacted their lives, and inspired them to become stronger advocates for the future.
HonoringWorldAIDS_IMAGE Webinar: Honoring World AIDS Day: In the 1980’s, approximately 90% of people with hemophilia were infected with the HIV virus from contaminated clotting factor. As a result, many lost fathers, mothers, sons, daughters, and siblings. This webinar gives a timeline of these events and features a panel of community members that talk about what it was like to live through this period.



 Sangre Latina_highres Webinar: Tú  tienes el derecho…  You Have the Right: Esta sesión te ayudará a entender tu derecho a usar un intérprete para tener una buena comunicación entre tu médico y /o proveedor de atención médica.Este seminario es presentado por el Programa Sangre Latina de HFA.

This session will help you understand your right to use an interpreter in order to have a good communication between your doctor/health care provider.

This webinar is presented by HFA’s Programa Sangre Latina.

Assisting and Advocating for the Bleeding Disorders Community