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 鈥揇oes 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.聽
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鈥檚 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.!
HFA Families Webinar: Allowing Your Children to Soar: It鈥檚 a fact of life that all children eventually leave home, and we want our children to the best they can when they鈥檙e ready to take that step! This webinar provides helpful information on building independence in our children.


Insurance Issues


Webinar:聽Insurance & Financial聽Planning:聽In partnership with HFA鈥檚 Blood Brotherhood & Families Programs, HFA鈥檚 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:聽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:聽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.聽This webinar was聽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


Treatment Issues

CDC_Webinar CDC Webinar: New Opportunities and Challenges in Hemophilia Care: The landscape of hemophilia care is experiencing significant changes that will impact patient treatment in the coming years. We are entering a period of unprecedented innovation in hemophilia care and treatment, with the licensure of one new non-factor replacement agent (emicizumab), and at least several more to come in the next several years. These new drugs will add to the spectrum of options for managing hemophilia patients; however, they may raise many new questions that only additional聽research can answer. In addition, the prospect of curing hemophilia with gene therapy has never looked brighter. Several phase 3 trials are ongoing, making it likely that we may be able to offer gene therapy to patients in our clinics in the near future.聽

During this presentation, Dr. Young will review these novel agents, including emicizumab, fitusiran, and concizumab. He will also briefly review the data from published gene therapy trials. He will also discuss some of the unique challenges that these new drugs raise for clinicians and provide some potential solutions to those challenges.

CDC_Webinar Webinar: My Life Our Future – Advancing Hemophilia Care Through Genomics: Hemophilia A and B are X-linked bleeding disorders that affect 1 in 5,000 male births. Many female relatives of males impacted by hemophilia are genetic carriers and may have bleeding symptoms. Hemophilia A and B result from DNA sequence variants in the F8 and F9 genes, respectively; these variants inform hemophilia inhibitor risk and bleeding severity. In 2012, surveys showed that only approximately one in five patients with hemophilia in the United States had F8 or F9 DNA analysis performed to provide more information about their disorder. My Life, Our Future (MLOF) is a partnership between Bloodworks Northwest, the American Thrombosis and Hemostasis Network, the National Hemophilia Foundation, and Bioverativ (formerly Biogen), to fulfill this unmet need, providing free clinical DNA variant analysis and establishing a research repository. MLOF collaborates with people with hemophilia and their families as well as hemophilia treatment centers across the United States. As of January 2018, 11,355 patients, carriers, and potential carriers enrolled in the project, and more than three in four participants consented to provide samples and clinical data to the MLOF Research Repository. In this webinar, Barbara Konkle, MD, the principal investigator for MLOF, will provide an overview of MLOF, share results of genetic analyses of participant samples, and discuss potential research advances through the MLOF Research Repository.
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鈥檚 Hopkins Hemophilia Treatment Center, and hosted by HFA鈥檚 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:聽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聽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
鈥 The main findings of the study;
鈥 How these findings were used to develop the guideline;
鈥 The clinical implications of the guideline; and
鈥 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:聽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.聽This webinar was聽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:聽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:聽At some point in your bleeding disorders journey, you will likely need to visit an emergency room. While those visits can鈥檛 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: 聽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: 聽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鈥檚 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:聽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鈥檝e tackled some of the biggest challenges women and girls face in the bleeding disorder community.聽Panelists discussed the difficulties they have faced, and how they’ve聽remained resilient when facing these challenges.


Family & Relationship Issues

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 鈥猋oung Adults Hangout: Maintaining Boundaries, Employment in the Bleeding Disorders Community:聽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, 聽an employer who upholds and respects your rights as a person living with a chronic disorder, and job flexibility, are not just 鈥榥ice to have,鈥 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: Caregiver Burnout: Caregiver burnout can sneak up on you and can impact the ability to care for yourself and others. During this webinar, Erin Sheaffer LCSW, will share how to identify the signs and symptoms of caregiver burnout. Attendees will also learn strategies for dealing with caregiver stress as well as resources that can be easily accessed.
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:鈥 The correlations and distinctions between depression and anxiety
鈥 The prevalence of depression and anxiety amongst young adults
鈥 The impact of chronic disorders on mental health
鈥 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.
HFA Families Webinar: Allowing Your Children to Soar: It鈥檚 a fact of life that all children eventually leave home, and we want our children to the best they can when they鈥檙e ready to take that step! This webinar provides helpful information on building independence in our children.



Science Update State of the Science on Inhibitors:

Inhibitor formation is a serious complication of hemophilia treatment that occurs in 30% of patients at highest risk 鈥 youth with severe hemophilia A. Inhibitors are caused by a T-cell dependent B-cell mediated immune response to exogenous clotting factor, neutralizing it and rendering it ineffective. Patients with an inhibitor require alternative treatments, which can be less effective in managing bleeds and lead to higher costs of care and increased rates of hospitalization and mortality. Further research could inform the development of methods to prevent and more effectively eradicate inhibitors.

To develop a road map for needed research in this area, working groups met in 2019 at a State of the Science Symposium at the National Heart, Lung, and Blood Institute. The meeting focused on developing scientific priorities and implementation strategies for the following types of research studies:

1. Clinical trials to prevent and eradicate inhibitors

2. Specimen collection and observational cohort studies

3. Immunology studies of the host immune response and tolerance

4. Longitudinal cohort studies of FVIII immunogenicity and predictors of inhibitor risk

PDF of presentation slides聽

Screen Shot Laboratory Testing for Inhibitors in the Changing Landscape of Hemophilia Treatment Products:聽Over the last 20 years, technical improvements in the manufacturing process have enabled the development of new recombinant factor VIII and factor IX treatment products used to treat and prevent bleeding episodes in hemophilia patients. These new products are innovative in that they exclude human and animal proteins from preparations, increase the efficiency of recombinant protein production, or extend the product half-life upon infusion. In addition, the FVIII mimetic, emicizumab, became available in 2017 for use in patients who have hemophilia A and inhibitors. Scientific advancements to improve factor replacement therapy have led to considerable quality of life improvements in patients who have hemophilia, but challenges remain.
In particular, the development of neutralizing antibodies, referred to as inhibitors, nullify the therapeutic value of factor replacement in up to 30% and 3% of patients who have severe hemophilia A and hemophilia B, respectively. Testing to detect inhibitors can be technically difficult and, like the treatment products themselves, has evolved in recent decades. The Bethesda assay for measurement of FVIII inhibitors was developed in 1975 and modified in 1995 to the Nijmegen-Bethesda assay, which is the current gold standard method. In addition, techniques to directly measure anti-factor antibodies have been described in recent years. The goal of this webinar is to examine inhibitor testing methods in the context of the changing landscape of hemophilia treatment products.
Screen Shot 2017-05-04 at 11.57.06 AM Webinar:聽CDC Inhibitor Updates: Road to Prevention:聽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鈥檚 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 鈥淐ommunity Counts,鈥 CDC鈥檚 Registry for Bleeding Disorders Surveillance.
InhibitorWhatYouNeed_Image Webinar: Inhibitors鈥擶hat You Need to Know: It鈥檚 the most feared complication currently in hemophilia鈥攖he 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鈥檚 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鈥攁 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 鈥 How to Get Involved

HowtoadvocoteForYou_Hangout_Image Young Adults Hangout: How to Advocate for YOU:Advocacy is at the heart of our mission. Listen to聽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:聽Capacities Needed for Effective Consumer Advocacy: 聽Learn more about the traits needed to be a good advocate.
WordsthatWork_IMAGE Webinar:聽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:聽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:聽Big Decisions – Are Clinical Trials Right for You?:As the market for new treatments for the 鈥巄leeding disorders鈥 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:聽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聽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.聽This webinar was聽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



History Hero Small

Young Adults Hangout: Honoring Our Past, Building Our Future: Building on the momentum of HFA鈥檚 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 聽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.


Webinar: Honoring World AIDS Day:聽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:聽T煤 聽tienes el derecho鈥 聽You Have the Right:Esta sesi贸n te ayudar谩 a entender tu derecho a usar un int茅rprete para tener una buena comunicaci贸n entre tu m茅dico y /o proveedor de atenci贸n m茅dica.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鈥檚 Programa Sangre Latina.

Sign up for E-mails, Dateline Magazine, and other ways to stay connected.