Rare pathologies: Orphan disorders and diseases

Did you know?

The endocrine system is complex and hormone disorders can have potentially profound consequences at a number of levels.

To help you find the best help possible, Concilio’s medical team is by your side to help you find the solution to your endocrine problems.

General information about rare disorders

Also called orphan disorders, rare disorders affect only a small portion of the general population. In Europe, a pathology is considered “rare” when it affects less than 1 in 2000 people. According to the WHO, five new disorders are reviewed every week in scientific literature. It is important to note that rare pathologies are considered as incurable.

Orphan disorders are serious, evolutive, and chronic. They can be caused by genetic origins, and usually appear at birth or during childhood. However, some are only visible during adulthood.

Rare disorders and diseases, a few figures

Currently, it is estimated that over 400 million people worldwide, of which 30 million Europeans and 25 million Americans are affected by an orphan disorder and 65% of these pathologies are considered as serious and debilitating. They are characterised by a precocious start (before 2 years of age), chronic pain, motor, sensorial, or intellectual incapacity. For example:

  • 5,500 people are affected by Amyotrophic lateral sclerosis

  • 12,000 people are affected by Drepanocytosis

  • 5,000-6,000 people suffer from Cystic fibrosis

  • 5,000 people are afflicted with Duchenne myopathy

  • As of 2017, approximately 800 cases of Fibro dysplasia ossificans progressive (FOP), or Stoneman Disease, have been confirmed worldwide, making FOP one of the rarest diseases known.

Why is it important to obtain the best care when you are ill?

Concilio enables you to access the best healthcare available to you. Our medical team will personally assist you to help you deal with any health issue.

  • In 45% of cases, your diagnosis or treatment plan could be optimized
  • 9 out 10 doctors prescribe unnecessary medical acts: surgery, repeat investigations, non-compliance with recommended best medical practice
  • All hospitals and clinics are not equal. Some are better suited to treating your illness than others.
  • Medicine is becoming more and more specialized. It can be complicated to obtain reliable medical information and ensure you get to see the medical practitioner that’s right for you and your condition

754 peer-recommended endocrinologists have been identified by concilio