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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

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    Hemophilia Village provides people with hemophilia and their families a variety of resources to help make living with hemophilia a bit more manageable.

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

    /Have-Questions-About-Navigating-Hemophilia.pdf

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

Spanish language resources

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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

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Patient Advocacy Groups

These websites are neither owned nor controlled by Pfizer. Pfizer does not endorse and 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.

*Required

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

A one page overview of the PAL program. Share this resource with someone in your life who may benefit from the support of a PAL!

Download now