There are several resources available to those living with Gaucher disease, providing everything from disease education to assistance with health insurance issues, all free of charge*.
* Testing is performed at no charge, but local charges may apply for sample collection, processing, or shipping.
Sanofi Genzyme’s CareConnectPSS is designed to support each patient’s unique journey through dedicated Case Managers and Patient Education Liaisons (also called “PELs”) who provide one-on-one assistance through a range of resources, programs, and other support offerings.
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.
All information and resources provided by these organizations are operated and maintained by the entity listed below. Please note this list is meant to serve as a general reference and additional resources may also be available through other organizations. Sanofi Genzyme does not endorse any particular organization or the content and programs they offer.
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.
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.
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.
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.
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.
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.
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.
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.
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.