Quick links

Cystic Fibrosis Community Care provides a range of programs and services to individuals and families living with CF throughout NSW and Victoria. This includes advocacy, information, education and awareness, community and hospital support, referrals, peer and social support and community events.

All our programs are available in both NSW and Victoria unless otherwise mentioned. To be eligible to receive our programs and services, you must be a current member of Cystic Fibrosis Community Care.

For more details, or to refer yourself or family for any of our services, please contact us on:

I'd like help with talking with others I'd like more information about living with CF How do I know if I'm a CF carrier? I'd like help with government supports I'd like support/information for my child's school I'd like to talk with others in the CF community I'd like someone to visit me while I'm in hospital I have a family member who has CF I'm a health professional working with people with CF

I’d like help with talking with my clinical team/workplace/child’s school/community organisation

We recognise the diverse range of issues faced by people with CF and their families, and we provide support with advocacy. Cystic Fibrosis Community Care advocates for members at a local, state and national level and works with other organisations to lobby for improvements for the CF community.

We also work one to one with members to provide support for self-advocacy, as well as advocating on behalf of the individual.

We can assist you to exercise your rights and achieve the outcomes you want. We can help make sure you are not disadvantaged due to any disability, your age, gender, sexual preference or your cultural background. We also have the expertise and experience in handling cases that often affect people living with CF.

There may be times when you feel it is hard to speak up for yourself, so an advocate can help you:

We can also provide you with advocacy assistance and/or referrals to the appropriate service.

For more information:

 

I’d like more information about living with CF

We provide information about CF to the CF community and raise awareness about CF in the broader community through a range of services and events.

Information line

We provide information about living with CF, social work support and referrals. We work with people who have CF, their families and friends, newly diagnosed families, people who want to know more about CF carrier screening, schools, workplaces, and more.

For more information:

Or visit:

Community Conference

Our Community Conference is held every 2 years. It brings people from the Victorian and NSW CF community up to date with the latest developments in the field of CF, and provides opportunities for discussion with medical and health experts and those affected by CF.

For more information:

Speakers’ program (VIC)

Our team of trained volunteer speakers can share their own knowledge and experience of living with CF with community groups, schools, sporting clubs, tertiary institutions and businesses.

Speakers include adults living with CF, and parents, partners, siblings and grandparents of people with CF.

Presentations are usually 30 minutes in length with additional time for questions. Presentations can be arranged either during the day or outside of working hours. A minimum of three or four weeks notice is required for any presentation request.

A donation of $100 or more to help cover speaker’s travel expenses and support the ongoing work of Cystic Fibrosis Community Care would be sincerely appreciated.

For more information:

 

How do I know if I carry the CF gene change

94% of children with CF are born into families with no known family history.

To have a child with CF, both parents must be a carrier of the gene changes that cause CF. If both parents are carriers of the CF gene, then with each pregnancy, there is a 25% risk of that child having CF.

Being a CF carrier does not mean you have CF. Carriers usually display no symptoms of CF.

CF carrier screening services are available in Australia to help you find out whether you or your partner carry the CF gene change.

For more information:

 

I’d like help with government supports, including the NDIS, Centrelink, housing, employment

We provide a range of practical assistance and social work support to our members to help with accessing resources and navigating the health system. This includes:

For more information:

 

I’d like information and support for my child’s teacher, school, kindergarten or child care centre

Support for school children and their families

We work with school children and families to ensure that all children with CF can have the best learning opportunities and experiences while managing their CF. We do this through:

We also run information sessions for parents about managing CF and school. See our events section for dates

We provide financial assistance with schooling through scholarships (VIC) and a volunteer tutor program

For more information:

Resources for teachers and educators

The CF Smart website provides a wide range of educational resources about CF for teachers, parents and students, including:

We can also provide support for teachers through:

CF Education Days are run by the Royal Children’s Hospital and Monash Children’s Hospital at the start of each school year. These provide detailed information about CF and how to create a CF-friendly environment. See our events section for dates.

For more information:

 

I’d like to talk and connect with others in the CF community

One-on-one peer support

Have you ever wanted to speak to someone from the CF community, who understands your situation and just gets it?

Our peer support program provides opportunities for people with CF, their family and carers to have a chat with a trained peer volunteer. Our peer volunteers are members of the CF community, including parents, siblings, grandparents and people with CF. Peer volunteers are available to have a chat via phone or online to share information and experiences, and provide a listening ear.

For more information:

Facebook group for women with CF

Our Facebook group for young women with CF, Sister5Roses was prompted by a group of our young members who were looking for a space to connect online. This group is a place for young women with CF (17+) to connect with others who share a similar journey.

The Sister5Roses group can be joined on request and is a safe place for you to share your stories and hear those of other young women. We invite you to post, comment and share things that interest you… either CF-related or not. We want this online community to be a place where you can drop in for a chat, make new friends, have a laugh and share your views on things that interest you.

Support dinners, events and information sessions

Each year, we host a number of support dinners, events and information sessions across Victoria and NSW and online. These dinners provide an opportunity for people living with CF and family members to meet others who are, or have been, in a similar situation. They are a great chance to meet new people and catch up with some old friends and share stories, experiences and resources.

If you would like to suggest a location for a support dinner or topic for an information session in the future, please contact our Programs and Support Services team in your state.

For more information:

Annual remembrance service (Vic)

Held annually in Melbourne, this non-denominational service remembers those people who with CF who are no longer with us. We extend a warm invitation to you, your family and friends to join us for our Remembrance Service to honour the lives of your loved ones who have lost their fight with CF.

The service includes special readings, time for reflection and the opportunity for those attending to light a candle and place a rose in remembrance. This a special time for the CF community to come together. We welcome all religious traditions and beliefs.

For more information:

 

I’d like someone to visit me while I’m in hospital

We regularly make inpatient hospital visits at the CF Centres in NSW and Victoria. So if you are an inpatient or planning a hospital admission, please feel free to give us a call so we can come by.

For more information:

 

I have a family member who has CF

We provide a range of practical assistance and support to people who have a family member, partner or care for a person who lives with CF.  We do this through:

There are also government supports for carers available.

Carer and Sibling Wellbeing Program (VIC)

Our Carer and Sibling Wellbeing Program provides support to parents, partners, grandparents, siblings and other primary carers who support members in Victoria living with CF. Eligible participants may be able to receive a subsidy to help with the cost of activities that focus on strengthening mental health and wellbeing, improving connections to local community and reducing isolation.
Applications for 2021 will close 1 June 2021 (or earlier if all grants have been distributed).

For more information:

Counselling Assistance Program for carers/siblings (VIC)

Our Counselling Assistance Program provides subsidies to carers and siblings of members in Victoria who have CF who would like to access counselling.
Applications for 2021 will close 1 June 2021 (or earlier if all grants have been distributed).

For more information:

 

I’m a health professional and work with clients with CF. Where can I learn more?

Interclinic provides an opportunity for NSW CF specialty clinics to engage with each other to explore and share knowledge regarding the impacts of living with CF. Each year, we have presenters and speakers who can provide new insights and clinical experience to the NSW adult and paediatric teams.

We hold two interclinic sessions a year in NSW.

For more information: