Because of the rarity of his disease, the patient may feel isolated. Specific information documents and associations can help him.
The definition of rare diseases is also applicable to interstitial lung diseases and rare lung diseases.
In the European Union and Switzerland, a disease is considered to be rare, if less than one person out of 2000 is affected (<0.05%), if it causes a danger for the patient's life or a chronic handicap and special diagnostic efforts and care are needed. There are now between 6,000 and 8,000 rare diseases in all medical fields, and they affect 30 millions people in Europe.
The diagnosis and management of these diseases are often difficult because of their rarity. The patient may feel isolated by their disease. A rare disease may be difficult to diagnose, and its mechanisms are ofte poorly understood. Recommandations for management and evidence-base therapies are often lacking. Rare diseases are characterized by reduced research activity, witch in turn prevents better understanding of their mechanisms.
More than a hundred of rare lung diseases have been identified. These conditions affect the bronchi, alveoli, blood vessels or interstitial lung tissue. The rare lung diseases are often severe and can lead to respiratory disability or be life-threatening.
The SIOLD Group has developed specific informations for patients with the support of the Swiss pulmonary league. This information aims at supporting the patients in their researches for information on diseases and does not however replace the relation between a patient and his doctor. Patients associations also exist in Switzerland and other coutries.
The supplied information is general and can not apply to particular cases.