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Hemophilia A

A Closer Look at
Hemophilia Management:
Improving Outcomes
with Personalized Care

Now Available On Demand

Watch Now

Produced in collaboration with:
Hemophilia Federation of America, National Hemophilia Foundation and NORD
Support for this patient education program was provided by Genentech, a member of the Roche Group.

Hemophilia A, also called factor VIII (FVIII) deficiency or classic hemophilia, is a genetic disorder caused by missing or defective factor VIII, a clotting protein. This means that the blood doesn't clot normally. When blood can't clot properly, excessive bleeding (external and internal) occurs after any injury or damage.

Patients and their families are seeking clarity of a treatment plan, given the complexity of management for severe hemophilia. For patients and their families, adherence to a multi-faceted treatment plan is oftentimes very difficult, resulting in less than optimal symptom management. This interactive, expert-led HCP-patient-family education activity includes questions that patients and families have regarding their treatment and overall care, tips for working with the health care team, and helpful strategies that other families have employed to address day-to-day challenges.

Watch this educational session to hear a dialogue between a pediatric specialist with expertise in hemophilia, an advanced practice provider, an HFA patient advocate, and parent of a child with hemophilia.

Watch today on-demand.

 

Chapters

  • Chapter 1

    Understanding Treatment Options

  • Chapter 2

    Reaching Your Treatment Goals

  • Chapter 3

    Taking Charge of Your Health: Self-Care and Making Treatment Decisions

Speakers

Stacy Croteau, MD, MMS

Boston Children's Hospital

Stacy E. Croteau, MD, MMS, is a pediatric hematologist and clinical investigator at Boston Children’s Hospital and assistant professor of Pediatrics at Harvard Medical School. She is the head of the Hemophilia/VWD program Boston Children’s Hospital and medical director for the Boston Hemophilia Center serving Boston Children’s Hospital and Brigham and Women’s Hospital. Dr Croteau is the principle investigator for several industry-sponsored and investigator-initiated clinical trials on hemophilia and other bleeding and clotting disorders. She has published numerous original research and review articles in peer-reviewed journals and presents nationally and internationally on a broad spectrum of bleeding disorder topics for medical professionals as well as the bleeding disorders community.

Kelly Tickle, MSN, APN, CWON, PCNS-BC, PPCNP-BC

Children's Healthcare of Atlanta

Kelly Tickle, MSN, APN, CWON, PCNS-BC, PPCNP-BC, works at Children’s Healthcare of Atlanta in the Hemophilia Treatment Center as the hematology nurse practitioner. Her clinical and research interest is in investigating adolescents and women with bleeding disorders who have heavy menses. Kelly was the recipient of the National Hemophilia Foundation Nursing Research Grant to study quality of life for females with bleeding disorders and heavy menstruation. She graduated with her Master of Science in nursing from Union University with dual concentrations of pediatric nurse practitioner and pediatric clinical nurse specialist. After receiving her graduate degree, Kelly practiced as a clinical nurse specialist for the brain tumor program at St. Jude Children’s Research Hospital.

Sonji Wilkes

Hemophilia Federation of America

Sonji Wilkes is the senior director of Policy, Advocacy, and Government Education at the Hemophilia Federation of America (HFA). After a decade of advocacy work that led to her family’s insurance struggles being published by national and international media, she joined HFA in 2013 and served as program manager for the HFA Families Program as well as communications manager prior to her current role. Sonji’s son has hemophilia and inhibitors so she is intimately familiar with the challenge of caring for a child with a chronic disorder. In 2019, she testified before a congressional committee about those challenges. Sonji is dedicated to helping other families better understand how to advocate for themselves and their families.

Mayra Cantu

Patient Presenter

Mayra Cantu is the mother of three boys with Hemophilia A severe. She enjoys spending all of her spare time with them because they are her superheroes. Mayra is an active member of the bleeding disorders community in Illinois, and a member of National Hemophilia Foundation’s Guia Cultural Task Force, where she facilitates workshops in Spanish in different states. The bleeding disorders community holds a big piece of her heart, and she enjoys working with and helping empower others.

 

Partners and Supporters

  • HFA
  • NHF
  • NORD