CF – Page 6 – Living Well With Cystic Fibrosis

Cystic Fibrosis Western Australia (CFWA)

Paula Woodward March 21, 2023

CFWA is the peak body for all people living with CF in Western Australia. They provide a comprehensive range of services, in home support, resources, education and advocacy. They engage in and support national research. the CFWA website includes heaps of resources and factsheets about living with CF as well as stories from the CF community. Read More

Cystic Fibrosis Australian Capital Territory (ACT)

Firefly Admin March 21, 2023

CFACT is the peak body for people living with CF in ACT. They provide supports services that focus on reducing the burden of CF as well as events. Read More

Cystic Fibrosis Trust

Firefly Admin March 21, 2023

UK-based Cystic Fibrosis Trust is "the charity uniting people to stop cystic fibrosis". They provide information and support relating to being physically well, mental well, and being fulfilled. The "Life with CF" section on their website includes the Award-winning pre-school and primary school pack, as well as information and resources to support people through every life stage. Read More

Cystic Fibrosis Foundation (CFF)

Paula Woodward March 21, 2023

Cystic Fibrosis Foundation is a US-based organisation that offers a variety of information about CF and managing CF, health and wellness, nutrition, family life, travel, treatment and care. Their rich community blog offers stories from a wide range of people living with CF. Bear in mind the content is written for a US audience - especially around insurance and treatment costs. Read More

CF at work

Firefly Admin March 21, 2023

A collection of CFNZ resources for people with CF and employers, including links to A guide to cystic fibrosis for employers, and information about employment law and rights. Read More

CF at school

Firefly Admin March 21, 2023

A collection of CFNZ resources for teachers and schools, parents and young children (such as siblings, class mates, and friends), explaining how to support a child with CF at school. Read More

Family planning

Firefly Admin March 21, 2023

A CFNZ guide for family planning for people with CF and their partners, including links to further information about genetics of CF, and support services. Read More

Parenting a child with CF

Paula Woodward March 21, 2023

This CFNZ webpage provides information and tips for parents of a child with CF. IT also includes a link to the SKIP website and app, which provides valuable resources for parenting children under age 5, including deal with behaviours that most parents find stressful. Read More

Supporting a family with CF

Firefly Admin March 21, 2023

This CFNZ resource is for friends and family who would like to know some practical and emotional ways to support someone they know with a child with CF. This includes a link to A guide to cystic fibrosis for family, whānau and friends. Read More

Cystic Fibrosis New Zealand (CFNZ)

Firefly Admin March 21, 2023

CFNZ is the peak consumer body for people living with CF in New Zealand. They focus on support, research, funding, and advocacy. CFNZ manages the national CF data registry and leads the national research strategy. They have useful information about CF and living with CF, including supporting a family with CF, parenting a child with CF, family planning, CF at school and work, and travelling with CF. Read More