Resources

What is cystic fibrosis?

CFTR Variant Classes

Modulator Treatments for Cystic Fibrosis: Effectiveness and Value

What is Cystic Fibrosis Screen Positive Inconclusive Diagnosis (CFSPID)?

 Carrier Screening

Living longer with cystic fibrosis

CF Strong

Living Well With CF

Everyday CF

Urinary incontinence and cystic fibrosis

Medication Stocktake Template

Breathe Easy – Queensland Government 

Living with a rare disease – Digital mental health fact sheet

Rare Voices Australia – Applying Mental Health First Aid in a Rare Disease Context Resource

Living with Cystic Fibrosis– Keeping Lungs Healthy with Kanga​

 

Factors impacting people with cystic fibrosis

Reducing the risk of infections for cystic fibrosis people in everyday life

Second-hand smoke and cystic fibrosis

Cystic fibrosis education programs for schools

A Guide to Cystic Fibrosis – School Presentation

CF Smart

Newly diagnosed

The first 12 months handbook

Sexual health

What they don’t tell you. A young person’s guide to sexual and reproductive health issues in cystic fibrosis

Transition for teens; focus on rural, regional, and remote.

Transition? What’s this got to do with me? A guide on the cystic fibrosis transition process for rural, regional and remote teenagers.

Transition Factsheets

Queensland Children's Hospital - Parent Handouts

Resources created by the Occupational Therapy department at Queensland Children’s Hospital

CF Tips for Parents Handout – Daily routines and treatment

CF Tips for Parents Handout – Education

CF Tips for Parents Handout – Managing procedures and procedural anxiety

CF Tips for Parents Handout – Introducing new treatments and equipment

CF Tips for Parents Handout – Managing mealtimes

CF Tips for Parents Handout – Starting school or daycare

CF Tips for Parents Handout – Tablet Taking

My CF Jobs Timetable

Cystic Fibrosis Questions

CF R.I.S.E – Responsibility.Independence.Self-care.Education

stethoscope on the cardiogram
Carers

Carers play a crucial role in our community—often without realising. For many people, looking after a loved one is ‘just what you do’. They are mums and dads, sons and daughters, brothers, sisters, grandparents, spouses, friends and neighbours.

The Carers (Recognition) Act 2008 defines a carer as:

“An individual who provides, in a non-contractual and unpaid capacity, ongoing care or assistance to another person who, because of disability, frailty, chronic illness or pain, requires assistance with everyday tasks.”

If you are the parent or partner of a person living with cystic fibrosis and you support them with management of their chronic illness and clinical adherence, then you may be eligible for carer allowance.

The Queensland Government has a list of support services for all carers, with some additional services specific to groups such as parents and grandparents, older and younger carers, and carers from culturally and linguistically diverse (CALD) backgrounds, a list of support service providers can be found here.

If you would like to speak confidentially to another cystic fibrosis parent or partner to share your lived experiences, please contact services to help you connect with the right person.

Useful Links

Emily’s Entourage publishes the Final 10% Survey Report, 2022

Ask Izzy – Find the help you need, now and nearby.

Financial Assistance Through The Australian Heart/Lung Transplants Association (AHLTA)

​Carers

Children
Mental Health
Queensland Children's Hospital - ACFDR Site Report 2023
  • Queensland Children’s Hospital – ACFDR Site Report 2023

For all cystic fibrosis health concerns, please always speak first with your clinical team.