Relationships

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

Trusted Care

Firefly Admin March 21, 2023

Trusted Care, a subsidiary of Cystic Fibrosis Queensland, is an NDIS provider, supporting to people with CF to allow them to live an ordinary life. Their plan management and support services are available to all Australians who qualify for NDIS support. 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

Chronic Illness Peer Support (ChIPS)

Firefly Admin March 21, 2023

ChIPS is a program for young people aged 12–25 with a primary diagnosis of a chronic illness, based at the Royal Children's Hospital in Melbourne (VIC). ChIPS offers peer support programs, camps, socials and leadership opportunities for children and young people across Victoria. 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

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

CF Together (Cystic Fibrosis Community Care, CFCC)

Paula Woodward March 21, 2023

CFCC promotes awareness of CF and provides support, advocacy and information to the CF community across NSW and VIC. They also fund medical research. CFCC provide direct services and have a range of information and resources on their website about CF and living with CF. They also have specific websites for parents of a newly diagnosed child with CF (see CF Baby Steps: http://www.cysticfibrosisbabysteps.org.au/) and for young people and adults living with CF (see CFStrong: https://cfstrong.org.au/). 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