Resources for people
with rare disease and
Their care partners

Journey Ahead Brochure

16-26 years old and Ready to take a more active role in managing your condition?

For younger patients aged 16-26, Journey Ahead provides specialized, confidential support to empower you to take charge of healthcare decisions

Download your Journey Ahead brochure

Perspectives for people with rare disease and their families

Want to learn, share, and connect with other patients
and families living with a rare disease?

Perpectives offers unique forums (in-person or group discussions) where people with rare disease and their families can share tips to help better manage everyday challenges

Download Perspectives Information Sheet

A guide for patients and families

Want additional information about CareConnectPSS?
Download your CareConnectPSS Brochure

Connect with a care partner organization

Looking to connect with a care partner organization?

In addition to your CareConnectPSS Support Team, the following organizations can help you learn more about caring for someone with a rare disease

This is not intended to be a comprehensive list of support organizations. Sanofi Genzyme does not review or control the content of non-Sanofi Genzyme websites. These listings do not constitute an endorsement by Sanofi Genzyme of information provided by any other organizations.

Caregiver Action Network

A family care partner 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


Courageous Parents Network

A nonprofit organization created to support, guide, and strengthen families as they care for sick children


Family Caregiver Alliance

The first community-based nonprofit organization in the country to address the needs of families and friends providing long-term care for loved ones at home

Looking to connect with a rare disease organization?

Looking to connect with a rare disease organization?

Everylife Foundation

Dedicated to accelerating biotech innovation for rare disease treatments through science-driven public policy

Global Genes

An organization that connects, empowers, and inspires the
rare disease community

National Organization of Rare Disorders

A patient advocacy organization dedicated to individuals with rare disease and the organizations that serve them

Rare Clinical Disease Research Network

Dedicated to advancing medical research on rare diseases

Genetic Alliance

Engages individuals, families, and communities to transform health through genetics, and provides opportunities to be active participants in their health

Genetic Disease Foundation

Supports research, education, and the prevention of genetic diseases

Patient Access Network Foundation

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

Patient Services Incorporated

Provides financial support and guidance for qualified patients with specific, rare, chronic diseases

Talk to your CareConnectPSS team Talk to your CareConnectPSS
team: Call 1-800-745-4447 Option 3 or request more information