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.
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
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 moreMeet 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 HubHow 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.
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