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RESOURCES

for Living With Rare Disease

Living with a rare disease can feel isolating and overwhelming. However, the Pfizer Patient Affairs Liaison (PAL) team has put together a variety of resources that can be accessed anytime for more information.

Hemophilia

Hemophilia is a type of bleeding disorder that causes the blood to take a long time to clot. This can cause abnormal bleeding that wont’s stop. People with hemophilia do not have enough clotting factor VIII or IX in their blood; sometimes, they do not have any. Depending on the level of clotting factor a person does have in their blood, hemophilia is classified as mild, moderate, or severe.

Websites

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    Hemophilia Village:
    Hemophilia Village provides information to people with hemophilia and their families. It may help make living with hemophilia a bit more manageable.

    hemophiliavillage.com

    Check out the features of Hemophilia Village in this 60-second video.

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    Her Hemophilia:
    A section of Hemophilia Village that houses education and resources for females, which shines a light on a segment of the community that historically has been underserved.

    herhemophilia.com

    Take a tour of Her Hemophilia in under a minute here.

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    HemHorizon.com
    HemHorizon provides educational information on treatment innovations that may be on the horizon for people with hemophilia.

    hemhorizon.com

    Watch this brief video for an introduction to the science of gene therapy in hemophilia.

Brochures

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    Have Questions About Navigating Hemophilia?
    This brochure helps to give an overview of programs and information that may help.

    Download now
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    Where Could Hemophilia Treatment Go Next?
    Here you’ll find a brief summary about the potential of gene therapy in hemophilia.

    Download now

Mobile App

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    HemMobile™:       
    Designed to help you keep track of your bleeds and infusions.      
    HemMobile is not intended for curing, treating, seeking treatment for, managing, or diagnosing a specific disease, disorder, or any specific health condition. Pfizer will not have access to any personal information you enter into HemMobile.      
     

    HemMobile is a registered trademark of Pfizer Inc.     
     

    App Store is a service mark of Apple Inc., registered in the U.S. and other countries. Google Play is a trademark of Google LLC.


    Check out some of the features of HemMobile in this 1-minute video.

These 1-page articles are quick reads to give an overview on a variety of topics.

Living Well With Hemophilia

Children, Teens, and Young Adults

Spanish language resources

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    ¿Tiene preguntas acerca de la hemofilia?

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    ¿Hacia dónde podría dirigirse ahora el tratamiento de la hemofilia?

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    Los adultos jóvenes y el seguro: Consideraciones para el momento de decidirse por un plan de cobertura médica

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    Cómo lidiar con la hemofilia en familia: Sugerencias para manejar la dinámica familiar

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    Bienestar emocional como un adulto maduro: Analizar los retos únicos de vivir con hemofilia

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    Preparación para emergencias como un adulto joven con hemofilia

    Descargar ahora

Patient Advocacy Groups

By clicking these links, you will be redirected to websites that are neither owned nor controlled by Pfizer. Pfizer is not responsible for the content or services of these sites.

Local and regional organizations may hold events and distribute resources as well. Enter your location information below to find a hemophilia patient organization or hemophilia treatment center (HTC) in your area.

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DISCLAIMER: Pfizer is providing this information as a resource to you and does not endorse the services provided by these organizations and treatment centers.

More about HTCs

HTCs provide comprehensive care for people with bleeding disorders. HTCs can provide many services that a primary care practice may not provide, including supply and delivery of factor, home infusion education, dental care, home visits by social workers, and insurance counseling.

Here are some things an HTC can provide:

  • A physical exam once a year; a checkup of joints, bones, and muscles; and a physical therapy checkup
  • Dental visit every 6 months
  • Blood tests and x-rays
  • Financial and/or emotional counseling with a social worker
  • Genetic counseling for potential parents
  • Education
  • Contact with local health care providers and hospitals

 

Patient Affairs Liaison Digital Brochure

An overview of the PAL program. Share this with someone in your life who may want to connect with a PAL!

Download now

Insurance Review Webinar Video

This 4-part series provides an overview of health insurance basics. It may be useful to help you understand the options and learn about coverage.

MyHealthcareFinances

MyHealthcareFinances is a tool to help you better understand your finances related to health care and steps you may take to lower your costs.

Learn more

MyHealthcareFinances está disponible en español: MyHealthcareFinancesEnEspanol

Stay Connected

If you are interested in speaking with a Patient Affairs Liaison (PAL), click or tap below.

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