New ‘Young Lungs’ program to help Aussie families

Lung Foundation Australia is launching an Australia-first paediatric program created specifically to help families and carers of children with a rare lung disease.

The Young Lungs program focuses on connecting and supporting families who have a child with a rare lung disease such as Primary Ciliary Dyskinesia (PCD), congenital diaphragmatic hernia or children’s Interstitial Lung Disease (chILD).

Young Lungs Expert Advisory Group Chair Professor Adam Jaffe, said the new program would develop information to help parents with the common issues they may face when their child is diagnosed or is going through the process of diagnosis for a rare lung disease.

“There is a clear need for Australian information and support for parents of children with a rare lung disease,” Prof Jaffe said.

“There are many different rare lung diseases,” he said.

“This variety means affected families can feel very isolated in facing the challenges that come with childhood lung disease.

“Young Lungs is about creating communities of support and advocating for the needs of children with rare lung diseases.

“Outside of asthma and cystic fibrosis, Australia offers limited information and support services specifically for parents and carers of children living with one of the many other rare or chronic lung diseases.

“That’s why it was so important that programs like Young Lungs are developed.

“The program is not disease specific and will work with other existing lung disease specific organisations to ensure parents are linked in with the most appropriate network for their particular needs.”

As part of the Young Lungs launch, Lung Foundation Australia is hosting a community consultation day bringing together clinicians, nurses, support organisations and parents of children with a rare lung disease.

Lung Foundation Australia CEO Heather Allan said consultation will play a major role in defining Young Lungs activity over the next few years.

“The community consultation will identify, discuss and prioritise gaps in services that are not currently addressed by disease specific organisations,” Mrs Allan said.

“American expert Ann Gettys, who leads the US chILD Foundation, will join us to talk about how these issues are tackled overseas and to share her experiences in building a similar program,” she said.

“This information will then be used by the Young Lungs Advisory Group which draws from key opinion leaders in paediatric lung disease from around Australia to develop the support network.”

For more information or to register your attendance about the Young Lungs Program or community consultation event please phone 1800 654 301 or email


Community Consultation Details

When: Saturday, 28 February, 2015

Where: Sydney Children’s Hospital, Randwick

High Street, NSW

Time: 1.30pm to 3.30pm

RSVP: Monday, 24 February, 2015

Lunch will be served from 1.00pm – 1.30pm.


Presentations include:

Professor Adam Jaffe, Chair of the Young Lungs Program

Ann Gettys, Director of the chILD Foundation – USA

Heather Allan, CEO of Lung Foundation Australia

Facilitated consultation with attendees