Idiopathic pulmonary fibrosis (IPF) causes the lining of the lungs to scar and thicken but its causes are unknown.
It is thought to cause the death of 500 people a year in Scotland and the frequency of the disease is increasing.
While treatments are available to help improve quality of life, there are currently no therapies that can reliably cure it or slow its progression.
Where a firm diagnosis has been made, half of patients die within three years.
Patients call it an "invisible disease" because awareness is low, even among some doctors and nurses.
Next week, the Scottish Interstitial Lung Disease Group, a group of clinicians with an interest in the disease, will meet in Stirling to discuss developing a more co-ordinated approach to improving the care of patients with IPF Scotland-wide.
Among them will be IPF expert Dr Owen Dempsey, consultant chest physician at Aberdeen Royal Infirmary, who said: "It affects a mainly elderly population and there's no-one really beating a drum for these people."
Dr James Cant, head of the British Lung Foundation Scotland and Northern Ireland, said it was working hard to increase awareness of IPF and a significant amount of its research budget was dedicated to the disease.
He said he was encouraged medical professionals were meeting to discuss ways of improving the current system.
This week is World IPF Week, promoted by a coalition of European and American research organisations and charities to boost IPF's profile.
The first-ever UK-wide organisation dedicated to the disease, the PF Trust, is also being set up.
Steven Chalmers, 44, from Mintlaw, Aberdeenshire, was diagnosed in October 2010.
He said: "I didn't know what it was. I thought I would be in and out of hospital.
"In fact, I was in for five weeks and returned home on oxygen 24 hours a day."
Mr Chalmers also has pulmonary hypertension, high pressure in the arteries carrying the blood to the lungs.
He has had to give up his job with a charity but still drives and visits the gym, where he can walk on the treadmill for up to 10 minutes.
He says: "My mum had IPF and died when she was 49, 17 years ago, but they don't know what causes it. It could be hereditary or an environmental factor me and my mum were exposed to, but they don't know.
"The treatment today is virtually the same, which is quite sad."
Mr Chalmers, a grandfather, has support from his wife Brenda, daughters Vikki, 21, and Tamara, 17, extended family and friends, and described staff at Aberdeen Royal Infirmary as "absolutely magnificent".
He urged other patients to join an online Yahoo IPF support group.
He said: "IPF is scarring my lungs and stealing my breath, but not breaking my spirit."
Several drug trials are ongoing to develop more effective treatments but only a limited number of Scottish patients may participate, partly due to a lack of research nurses who manage clinical studies on a day to day basis.
Dr Dempsey added: "Unless we involve our patients in well-designed studies on novel drug therapies, we'll be having the same conversation in 20 years' time. But I can only afford to fund one day per week of research nurse time."
A Scottish Government spokesman said: "The Scottish Government Chief Scientist Office has a well-established process to support and promote high-quality research aimed at securing lasting improvements to the health of the people of Scotland."
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