Planning

Cystic Fibrosis Australia (CFA)

Firefly Admin March 21, 2023

CFA is the peak consumer body for people living with CF in Australia. They focus on collaborative programmes, research, funding, partnerships and advocacy. CFA encourages cohesion amongst the state and territory bodies, manages the national CF data registry, leads the national research program, conducts a biennial CF conference and supports the quality improvement program. They have useful information about CF, living with CF, and mental health on their website as well as links to CF-Donut (information about CF and comorbidities) and Consumer Connect. Read More

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

Carer Gateway

Firefly Admin March 21, 2023

Carer Gateway provides free services and support for carers. They offer in-person and online peer support groups, tailored support packages, transport services, in-person and online counselling and coaching; online skills courses and access to emergency respite. Read More