Cystic Fibrosis NSW is a subsidiary of the parent company Cystic Fibrosis Australia that has branches and offices in all the major states of Australia. It was incorporated in 2003 when certain larger companies came together to form it as a limited company where the other larger CF organizations were the guarantors and founding members. The organization is focused towards research in the subject of CF and raising awareness amongst the community about the disease. Every fourth day, a baby suffering with CF is born and there are hardly any people who reach 40. Most would die in their teenage.
Before getting to know the organization in a better way it would be good to know about the area that CF Australia works in. Cystic Fibrosis is a chronic illness which is genetically transmitted and life-shortening. It is the most common in such category of diseases today. Primarily the disease affects the lungs and the digestive system though other organs may also be affected. One in 25 people carry the CF gene and they are unaware of being carriers. As the patient’s age increases, the complications also increase and more care and support is needed by the individual. The organization ensures that the few years these kids have are great in terms of quality of life and better health. All organizations that are working in the area of CF work loosely with the CF Australia in order to achieve their objectives. Most of the funding that is given to research in Cystic Fibrosis comes from two major organizations: the Australian Cystic Fibrosis Research Trust (ACFRT) and Cystic Fibrosis Research Limited. Most of the organizations begin as small groups that are meant to provide support to people suffering and later they become member organizations of the whole cluster. Today, the organization along with other member charities is providing support services to people in their area. They raise public awareness and promote carrier screening. Also these member organizations will lobby for the betterment of people suffering with CF and the research that is needed to combat the disease.
Vision, Mission and Goal
The vision of Cystic Fibrosis NSW is to see people live lives unaffected by CF. Their mission is to promote better living for the people suffering and their goal is to support these people through services, education and research that will eventually help them fight their condition in one way or another.
What we Do
We provide support services like
- Peer support and advocacy
Our support programs include
- outreach clinics
- self-management programs
- family education
- hospital survival packs
We also support
- raising public awareness
- subsidy for health equipment
- subsidy for emergency
- school talks
- breaks for caretakers and mates
- travelling to the hospital and acquiring accommodation
- entertainment and lunches for the parents and caretakers
Get involved with the charity through fundraising and donations. Also your can form a peer group or a support group to raise awareness on Cystic Fibrosis, commonly known as CF.