Lives unaffected by cystic fibrosis

Cystic Fibrosis Community Care

At Cystic Fibrosis Community Care (CFCC) our mission is to promote research, increase awareness of cystic fibrosis (CF) and provide education, support and advocacy to the CF community across Victoria and New South Wales.

  • 65k for 65 Roses Walkathon

    Join Sydney's longest one day walkathon to support Cystic Fibrosis Community Care and The Children's Hospital at Westmead.

    Find out more
  • Community Focus Magazine

    Read the latest issue of our magazine, bringing you news and stories from the CF community from NSW and Victoria. 

    Find out more
  • Christmas / New Year Hours

    Our offices in Melbourne and Sydney will be closing after Friday 21 December and re-opening on Wednesday 2 January 2019.

    Find out more

CF is the most common life threatening genetic disorder affecting Australians today for which currently there is no cure.

While CF impacts on the whole body, it primarily affects the respiratory and digestive systems. From birth, a person with CF undergoes constant complex and highly specialised medical management, careful monitoring and maintenance of a specific diet and physiotherapy regime.
Read more

Are you one of the 1 in 25 Australians who carry the CF gene change?
Read more

We provide a a range of programs and services to individuals and families living with CF in NSW and Victoria.

This includes advocacy, information, education and awareness, community and hospital support, referrals, peer and social support, community events and financial support. Find out more: 

Read our infection control policy

There are a number of ways you can help and join us to raise awarenss anbout CF and support people with CF and their families.

Volunteer with us

Donate to CFCC

Fundraise for CFCC

Attend one of our events

Read our infection control policy

Become a member of CFCC to support our people with CF, stay up to-date with our work, and to access our programs and support services.

Community Focus

Our quarterly magazine bringing you information about the latest CF news, events, programs and services from Victoria and NSW

PASSwords enewsletter

A monthly eNews delivering all the latest CFCC programs and support services news to your inbox

Annual Reports

Cystic Fibrosis Victoria (CFV) was founded in 1974 by a group of parents of children with cystic fibrosis (CF) and became an Incorporated Association in 1984. Today, CFV is known as Cystic Fibrosis Community Care (CFCC) as we believe this more accurately reflects our fundamental role, caring for our community.  In 2017 CFCC and CFNSW merged into one organisation. In the public sphere, CFCC is recognised as a public benevolent institution and is governed by a board of directors composed of representatives of people from the CF community and others with particular expertise in advancing the mission of CFCC.

We provide advocacy, support and information services to people living with CF and their families. We also conduct awareness programs for the general public and fundraise to support service provision to families and adults living with CF and to promote CF research. As a not-for-profit charitable organisation CFCC relies heavily upon the generosity of the Victorian and NSW public as well as private philanthropic sources. Approximately 20% of CFCC's income is provided by the Government.

Our key result areas

  • Programs and services - provision of support programs and services that help to enhance the quality of life and meet the needs of over 900 members.  
  • Research - promotion and facilitation of research into improved treatments and therapies for people with cystic fibrosis, and fundraising to support the Australian Cystic Fibrosis Research Trust.
  • National unity and collaboration - participation in cooperative initiatives between the CF organisations across Australia.
  • Public awareness and communications - maintaining and improving relations and communication with members, the wider CF community, and other key stakeholders.
  • Information, education and advocacy - delivery of information and education services to key stakeholders, and representing individuals and groups on issues that require government or institutional action.
  • Fundraising - a committment to generating a regular stream of income to meet program delivery objectives, support research initiatives and remain financially viable in the future.
  • Governance and transparency - provision of a balanced, transparent and proactive governance and delivery of positive program outcomes through a highly productive workforce.

View and download our 2017 Annual Report

Why the rose?

"65 Roses" is what some children with CF call their condition because the words are much easier for them to pronounce.

Mary G. Weiss became a volunteer for the Cystic Fibrosis Foundation in America in 1965 after learning that her three little boys had CF. Her duty was to call every civic club, social and service organisation seeking financial support for CF research. Mary's 4-year-old son, Richard, listened closely to his mother as she made each call.

Weiss Brothers Then
The Weiss brothers, Richard, 5; Arthur, 7 and Anthony, 16 months.
*sourced from the Cystic Fibrosis Foundation

After several calls, Richard came into the room and told his Mom, "I know what you are working for." Mary was dumbstruck because Richard did not know what she was doing, nor did he know that he had cystic fibrosis. With some trepidation, Mary asked, "What am I working for, Richard?" He answered, "You are working for 65 Roses." Mary was speechless.

He could not see the tears running down Mary's cheeks as she stammered, "Yes Richard, I'm working for 65 Roses."

Since 1965, the term "65 Roses" has been used by children (and adults) of all ages to describe this condition and has been adopted by many CF organisations all over the world as their brand.

Cystic Fibrosis Community Care (CFCC), along with all Australian CF organisations proudly bear the rose logo in recognition of this inspirational story. 

The "65 Roses" story has captured the hearts and emotions of all who have heard it and is a registered trademark of CFCC.

Victoria

80 Dodds Street, Southbank, VIC 3006 
P:  03 9686 1811
E:  admin@cfcc.org.au    
F:  03 9686 3437

New South Wales

Unit 46, Homebush Business Village, 11-21 Underwood Road, Homebush, NSW 2140 
T:  02 8732 5700
E:  reception@cfcc.org.au
F:  02 8732 5799

Give us feedback

CFCC aims to provide services that are relevant and accessible and your feedback will help us improve our programs and services so please let us know if you have been satisfied with a service, if you would like to make a suggestion, or if you have any feedback. 

We take your feedback and complaints seriously. Making a complaint will not affect any service you receive from us, and information about your feedback will only be shared with the staff who are involved in the formal response.

Ways you can give us feedback
There are several ways you can provide us with feedback including:

  • By email to admin@cfcc.org.au
  • By telephone: (03) 9686 1811 9.00am - 5.00pm. Monday – Friday
  • By mail addressed to the CEO, Cystic Fibrosis Community Care, 80 Dodds Street, Southbank Vic 3006
  • By appointment at our offices in Southbank, Vic or Homebush, NSW

What happens when you make a complaint

  • Upon receipt of a complaint the CFCC staff member will attempt to resolve your complaint immediately if possible.
  • If the CFCC staff member is unable to resolve your complaint, it will then be referred to the CEO. The CEO will discuss with you a timeframe for investigation and resolution (usually within 10 working days wherever possible). Once the investigation has been completed, the CEO will provide a written response to you, explaining what kinds of actions have been taken.
  • If you are not happy with the response, you can request the complaint be considered by the Board of CFCC. A written response will be provided by the Board.

What if you need help to make a complaint?
If you need help to make a complaint you can: