Living Well With Cystic Fibrosis

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Cystic Fibrosis Foundation (CFF)

Cystic Fibrosis Foundation (CFF)

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

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Cystic Fibrosis Community Care (CFCC)

Cystic Fibrosis Community Care (CFCC)

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

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Cystic Fibrosis South Australia (CFSA)

Cystic Fibrosis South Australia (CFSA)

CFSA is the peak body for all people living with CF in South Australia. CFSA provides access to information, support services, advocacy, education and practical support. They also contribute to national research. They have information about CF and living with CF on their website. Read More

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Cystic Fibrosis Australia (CFA)

Cystic Fibrosis Australia (CFA)

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

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Carer Gateway

Carer Gateway

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

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Family planning

Family planning

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

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Cystic Fibrosis Queensland (CFQLD)

Cystic Fibrosis Queensland (CFQLD)

CFQLD is the peak body for all people living with CF in Queensland. CFQLD provides support services, advocacy, education, research funding and practical support. They host a range of information and resources on their website about CF and living with CF as well as links to CF Smart (education program) and CFStrong (information for young adults and adults living with CF). Read More

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Cystic Fibrosis New Zealand (CFNZ)

Cystic Fibrosis New Zealand (CFNZ)

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

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Parenting a child with CF

Parenting a child with CF

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

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Cystic Fibrosis Tasmania (CFT)

Cystic Fibrosis Tasmania (CFT)

CFT is the peak body for all people living with CF in Tasmania. They provide a range of services including counselling and financial support, educational support and advocacy. Read More

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