Every Family Deserves Support from Day One

A cystic fibrosis diagnosis is the start of a new journey for families.
For parents and caregivers, the days and months after learning that a child has cystic fibrosis (CF) can bring a lot of new information and experiences. There may be treatments to learn, appointments to attend, and new routines to build. Along the way, many families gain confidence, develop new skills, and discover supports that help them care for their child and family.

At Cystic Fibrosis Canada, we believe no family should have to navigate these early days alone. That's why we have a growing collection of resources and supports for families of infants and young children newly diagnosed with CF. This includes our newly diagnosed care packages and Cystic Fibrosis and Your Baby: A Supportive Guide for the First Years. These help families find trusted information, practical tools and comfort when they need it most.

Ashley, her husband and newborn daughter take a family photo

Designed with Families, for Families

Our program to support newly diagnosed families was developed with input from parents, caregivers and pediatric CF clinicians. The goal is simple: to provide practical support, reduce uncertainty, and help caregivers learn what works for their family. When families have access to clear information, practical tools and community support early on, they are better equipped to establish routines, navigate treatments and care for both their child and themselves.

New: Cystic Fibrosis and Your Baby

A Supportive Guide for the First Years

At the heart of this program is a guide designed for parents and guardians of babies newly diagnosed with CF.

Created with people with lived CF experience and healthcare experts , the guide offers trusted, easy-to-understand information about:

Building confidence during the first years after diagnosis
I’ve just found out my baby has cystic fibrosis
About cystic fibrosis
Looking ahead as your baby grows
Caring for an infant with CF
Family life
Your own well-being
Real-life experiences

Explore guide

A father laughs with his son while holding home

Support for Every Family

The newly diagnosed care packages will be given out by pediatric CF clinics to families who receive a new diagnosis starting in the fall of 2026. The digital version of Cystic Fibrosis and Your Baby: A Supportive Guide for the First Years is available to everyone in our community.

Whether your child's diagnosis was recent or years ago, we hope the resources and information in the guide provide support and helpful information for your family's journey.

Learn more

Meet Families Living with CF - VIDEOS

What's Inside the Newly Diagnosed Care Package?

The newly diagnosed care package combines trusted information with helpful resources that families can begin using right away. These include:

The newly diagnosed parent & guardian guide
Medication and enzyme storage tools
Oral syringes and feeding supports
Soft-tipped spoons
Skincare products
Airway clearance tools
Letter from Parents & Guardians
Additional supportive and comforting materials
Cystic Fibrosis Canada program and support information

Each item has been selected to help make daily CF care easier and reduce stress and uncertainty for families. Newly diagnosed care packages are given out by Canadian cystic fibrosis pediatric clinics.

More Resources for Families

In addition to the guide and care package, families can access a variety of resources that support learning, connection and daily care.

Resource Hub

How You Can Help

Every year, families across Canada begin their journey after a new CF diagnosis. Early connection can make a meaningful difference in how they cope, build confidence and care for their child.

Support from donors, partners and fundraisers helps make programs like these possible, ensuring families receive trusted information, practical tools and reassurance during their CF journey.

Donate today

James Fournier holds his wee babe wearing a tartan cap.

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