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Highlights

Orphanet Europe – Online knowledge on rare diseases

A rare disease is defined as a disease affecting fewer than five people in 10 000. Little is known about these diseases and most of the time there are no cures for them. However, through the funding of the Orphanet Europe project the EU is encouraging better treatment and care for rare diseases patients.

 

A lack of knowledge

 

Due to lack of knowledge, rare disease, patients and their doctors often feel isolated. Not enough is known about rare diseases, medical students are not taught about them at all and research laboratories have little incentive to invest in the development of cures.

 

Medicines for rare diseases say it all: they are called 'orphan drugs'.

 

 

Rare disease patients not so rare

 

A rare disease is rare after all. That is also why so little is known about rare diseases both by the public and medical professionals.

 

While a rare disease affects only a few people, there are between 6 000 and 8 000 rare diseases affecting altogether between 6% and 8% of the EU population, i.e. there are 27–36 million people suffering from a rare disease in the EU.

 

Joining forces for better treatment

 

With limited resources, health systems in individual European countries cannot provide efficient care solutions for all rare diseases patients. That is why the EU supports projects aimed at pooling resources and sharing knowledge at EU level.

 

The EU is funding the Orphanet Europe project, which collects and gathers fragmented information on rare diseases in one place. Doctors everywhere in Europe can access this information via the Orphanet website and are now better equipped when treating a patient with a rare disease.

 

The ultimate objective of the project is for patients all over Europe to benefit from better treatment thanks to solidarity and knowledge sharing in Europe.

 

The portal for rare diseases and orphan drugs

 

Since its creation in 1997, Orphanet has grown as a reliable international source of information. Its website, 'the portal for rare diseases and orphan drugs', is the core of the project with information on more than 5 954 diseases or groups of diseases.

 

It is continuously contributing towards improving diagnosis, care and treatment of patients. It includes:

 

  • An inventory of rare diseases,
  • An encyclopaedia for health professionals and patients,
  • Research projects,
  • Emergency guidelines,
  • Information on orphan drugs, etc.

 

To ensure information is widely accessible by doctors, patients and their family, the portal has been translated into several languages: English, French, Spanish, German, Italian and Portuguese. More languages will be added in the near future.

 

 

For more information:

Videos on rare diseases

Orphanet website

European Commission work on rare diseases