Definitions - Luxembourg
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Definitions

Definitions

Rare diseases are those that affect less than 5 persons in 10.000. There are approximately 7000 identified rare diseases. Each month there are 5 new rare diseases documented in medical journals. In Europe the number of impacted individuals is estimated at 30 million. There are approximately 30.000 individuals concerned by rare diseases in Luxembourg.

 

Nearly 80% of rare diseases are of genetic origin. They may also be the result of infections (bacterial or viral), allergies and environmental causes. However, for a large number of diseases the origin is unknown. Rare diseases are present throughout a person's entire life, even if symptoms do not immediately appear. 75% of rare diseases affect children.

 

Rare diseases are often chronic and lifethreatening. They have an impact on

  • movement (muscular diseases ...)
  • vision (retinitis ...)
  • cognitive capacities (Fragile X ...)
  • breathing (cystic fibrosis ...)
  • immune system (immune deficiencies ...)

Rare diseases are characterised by a wide diversity of symptoms and signs that vary not only from disease to disease but also from patient to patient suffering from the same disease. This often leads to improper diagnosis and treatment. Close cooperation between specialists, researchers, health care providers and patients is imperative for the diagnosis, treatment and research for rare diseases.

 

Living with a rare disease is an ongoing learning experience for patients and their families, friends and school or professional colleagues.

 

The following infographic (in French) sums up the statistics and the services ALAN provides. Click on the infographic to open a larger version in a new tab.

 

 

List of rare diseases

Please refer to the Orphanet website: http://www.orpha.net/
 
 
 
Orphanet is a unique resource that brings together and enhances knowledge on rare diseases to facilitate and improve the diagnosis, care, and treatment of patients with rare diseases. The objective of  Orphanet is to provide high-quality information on rare diseases and to allow equal access to knowledge for all stakeholders.

Alan
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