Lives unaffected by cystic fibrosis

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Cystic Fibrosis Community Care

Cystic Fibrosis Community Care (CFCC) offer a range of programs and services to individuals and families living with cystic fibrosis in Victoria

Download our 2018 Victorian Programs and Support Services guide

If you would like to further information or to refer yourself or family for any of our services please contact us on (03) 9686 1811 or email support@cfcc.org.au.

Become a member of CFCC to access our member-only services in Victoria.

If you would like to find out more about services we provide in NSW visit our NSW programs and support services information.

We recognise the diverse range of issues faced by individuals with CF and their families and provide support on advocacy issues. CFCC advocates for members at a local, state and national level and liaises with other organisations to lobby for improvements for those living with CF. CFCC also works one-to-one with individuals providing support for self advocacy as well as advocating on behalf of the individual.

What is an Advocate?

An advocate provides information and advice to help you to take action to resolve any concerns. An advocate may also need to take a more active role in representing your rights to another person or organisation. 

Who can be an Advocate?

An advocate can be a family member, your main carer, legal representative, trusted friend or someone from an agency that provides advocacy services.

Cystic Fibrosis Community Care- Victoria (CFCC) is supported by the Victorian Government to provide you with advocacy assistance and/or referrals to the appropriate service. We offer a range of advocacy services to our members:

  • Self-Advocacy
  • Individual Advocacy
  • Systemic Advocacy

Why use the CFCC Advocacy Services?

We can assist you to exercise your rights and achieve the outcomes you want.  We can help make sure that 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:

  • clarify what is happening and sort out any confusion or misunderstandings
  • contact the relevant service, discuss the issue and the options for solutions
  • support you to negotiate a complaint processes
  • supporting you at face to face meetings with a service
  • write support letter

For more information on the advocacy services please contact on (03) 9686 1811 or support@cfcc.org.au

Hospital visits

If you are planning a hospital admission please feel free to give us a call so we can come in and visit you. We can then come in for a chat, maybe bring you a treat or two and we may be able to help you out with assistance while you are unwell if you need it.

Contact us on support@cfcc.org.au or phone (03) 9686 1811

This program is supported by funding from the Commonwealth and Victorian Government under the HACC program

One on one peer support

Have you ever wanted to speak to someone who understands CF, without having to explain what it is?

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

Find out more online or contact us on programs@cfcc.org.au or phone (03) 96861811.

Online groups

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 (18+) 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're hoping this online community will 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. We're looking forward to receiving your friend request.

Support dinners for family members

Each year we host a number of support dinners across Victoria. These dinners provide an opportunity for 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.

To find out more visit our Events page, or contact us on programs@cfcc.org.au or (03) 96861811.

Afternoon tea for recently diagnosed families

Each year we host a number of support activities across Victoria. One of these is a get together for families who have a member who has been recently diagnosed with CF. During the get together families can share experiences and gain information in a relaxed setting. It also provides families with an opportunity to be introduced to CFCC staff and our services.  

When:  Saturday 2 June 2018
Where:  Melbourne Marriott Hotel, Exhibition St & Lonsdale St, Melbourne Vic
More information

This program is supported by funding from the Victorian Government.

Afternoon tea for grandparents 

Each year we host an afternoon tea for people who have a grandchild with CF.  This afternoon tea provides an opportunity for grandparents to meet, share experiences and find out more about CF.

Find out more about our afternoon tea for grandparents

Annual remembrance ceremony

Held annually, this is a service to remember those who have lost their battle with cystic fibrosis (CF) and all those affected by this loss.

We would like to extend a warm invitation to you, your family and friends to join us for our Remembrance Service to honour the lives of people we have lost to CF.

The ceremony 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.

Find out more about our remembrance service

There are a range of concessions and benefits offered by Centrelink and other organisations that people who have CF or their parents or carers may be eligible to apply for

Find out more about some of the concessions and benefits

Take a Break grants

Happy Family grants

Holiday cabins

Simon's Adventure Fund

Simon's Adventure Fund has been generously established by Simon Minson's family. It's aim is to enable successful applicants aged 18 years and over who have cystic fibrosis (CF), to participate in an activity on their bucket list. It may be something that pushes the boundaries, it may be something that seems a little crazy. Simon was always up for an adventure. He snowboarded, skydived, bungy jumped, shot down rapids, dived with sharks, was a keen trail bike rider, got dangerously close to a brown bear in the wild, loved being behind the scenes at the Zoo and played footy against guys twice his size! He chose to live his life to the full with adventures large and small. Simon died in 2014 from complications due to his CF whilst on one of these adventures with his mates in Vietnam. Simon's family want people with CF to live life to the full and so they have established Simon's Adventure Fund to assist others to fulfil their own adventure.

Find out more and download an application form

94% of children born with CF were 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. 

Find out more about CF carrier screening