There are several resources available to those living with Gaucher disease, providing everything from disease education to assistance with health insurance issues.

*Testing is performed at no charge, but local charges may apply for sample collection, processing, or shipping.

CareConnectPSS®: Personalized Support Services For Rare Diseases

CareConnectPSS represents Sanofi Genzyme’s more than 35-year commitment to supporting the rare disease community. Your CareConnectPSS team will work closely with you and your healthcare providers to give you the confidential and personalized support you need. We support each patient’s unique Gaucher disease journey with dedicated Patient Education Liaisons and Case Managers who can provide one-on-one assistance through a range of resources, programs, and other support offerings.

CareConnectPSS Patient Education Liaisons (PELs)

Your CareConnectPSS Patient Education Liaison (also called a “PEL”) can provide disease and treatment education on topics such as family trees, genetic inheritance, and genetic testing for your family members, if needed. Your PEL can also provide other resources for disease awareness to support you and your family.

CareConnectPSS Case Managers

Your CareConnectPSS Case Manager can provide insurance support, from claims to billing assistance, as well as assistance with connecting to resources that can help with out-of-pocket costs. Additionally, your Case Manager can assist with insurance changes related to your employment status, age, or marital/dependency status. Information you provide will always be kept confidential.

Contact a CareConnectPSS Care Manager or PEL

If you reside in the United States and would like to speak with a CareConnectPSS Case Manager or PEL in your area, please call: 8am until 6pm EST, Monday through Friday at: 1-800-745-4447 (option 3) Or email info@CareConnectPSS.com

Support Networks

Below are various professional medical organizations, national and international Gaucher disease groups, Gaucher disease education websites, and patient assistance programs that work to support Gaucher disease patients and their families and caregivers.

This listing is provided as a resource only and does not constitute an endorsement by Sanofi Genzyme of any particular organization or its programming. Additional resources on this topic may be available and should be investigated. Sanofi Genzyme does not review or control the content of non-Sanofi Genzyme websites.

Caregiver Action Network

Caregiver Action Network (CAN) is a family caregiver organization working to improve the quality of life for Americans who care for loved ones with chronic conditions, disabilities, disease, or the frailties of old age. CAN (the National Family Caregivers Association) is a nonprofit organization providing education, peer support, and resources to family caregivers across the country free of charge.

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Courageous Parents Network (CPN)

Courageous Parents Network (CPN) is a nonprofit organization created to support, guide and strengthen families as they care for sick children. CPN (Courageous Parents Network) web site provides space for parents to learn from other parents and pediatric care providers across the country as they navigate caregiving and advocate for their loved ones.

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Genetic Alliance

Genetic Alliance engages individuals, families, and communities to transform health through genetics and provides opportunities to be active participants in health, from services in traditional health settings to groundbreaking research endeavors. They partner with individuals and communities to transform health systems, convene powerful networks, deliver actionable information, build intuitive tools, and drive policy decisions. Genetic Alliance is a 501(c)(3), not-for-profit organization.

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Genetic Disease Foundation

The Genetic Disease Foundation (GDF) was established in 1997 by patients and families affected by genetic disorders. The Foundation’s mission is to support research, education and the prevention of genetic diseases. The foundation is completely run by volunteers, which enables it to use all of its fundraising dollars to directly fight genetic diseases. GDF is a nonprofit, 501c(3) organization.

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National Gaucher Foundation (NGF)

The National Gaucher Foundation (NGF) is an independent nonprofit dedicated to serving US patients with Gaucher disease and their families. Through financial support, educational programming, patient services, and collaboration with medical professionals, NGF empowers Gaucher patients to live a better today. The NGF is a 501(c)(3), not-for-profit organization.

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National Organization for Rare Disorders (NORD)

NORD is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 260 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services. NORD is a nonprofit, 501(c)(3) organization.

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Patient Access Network Foundation (PAN)

The Patient Access Network (PAN) Foundation is dedicated to helping federally and commercially insured people living with life-threatening, chronic, and rare diseases with the out-of-pocket costs for their prescribed medications. Partnering with generous donors, healthcare providers and pharmacies, PAN provides the underinsured population access to the healthcare treatments they need to best manage their conditions and focus on improving their quality of life. PAN is an independent, national 501(c)(3) organization.

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Patient Services Incorporated (PSI)

Patient Services Inc. (PSI) finds solutions to the challenges that face the chronically ill in the United States. PSI provides financial support and guidance for qualified patients with specific, rare, chronic diseases. PSI assistance programs help patients and their families living with an expensive chronic illness afford lifesaving treatment. Patient Services is a 501(c)(3), nonprofit, charitable organization.

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Society for Inherited Metabolic Disorders

The Society for Inherited Metabolic Disorders (SIMD) aims to increase knowledge of and promote research in inborn errors of metabolism in humans and to stimulate interactions between clinicians and investigators in inborn errors of metabolism. SIMD seeks to foster training and maintenance of a core of qualified investigators and practitioners in the field and to promote public understanding of inborn errors of metabolism. SIMD is a nonprofit professional organization.

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