Rare illness – and suffering begins!

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Rare illness – and suffering begins!

Rare illness – and suffering begins!

Author Meopin - 19 January 2018

A rare disease is a condition with a very low prevalence. To fit into this definition, the disease must affect one case out of 2,000 people.

According to the European Medicine Agency, there are between 5,000 and 8,000 distinct rare diseases in the EU. They affect between 27 and 36 million people.

Examples of rare diseases include cystic fibrosis and hemophilia, Angelman syndrome (incidence of about 1 per 15,000), or Opitz syndrome, which is extremely rare (one case per one million of people).

The sick and their families often feel alone in their grief. And countries are struggling to find the resources to conduct research, including patients to conduct clinical trials. Often, the critical mass of victims is lacking. If international collaboration is therefore necessary, the fact remains that the exchange of information, data and samples on a global scale is hampered by the absence of a complete classification of rare diseases, standard common ontologies.

In 2016, Luxembourg began work on a future National Plan for Rare Diseases. This plan was expected by the end of 2017. The Ministry of Health estimates that 30,000 people are affected by a rare disease in Luxembourg.

Meopin will monitor developments in this field and will make available its platform for searching and rating of healthcare professionals for the benefit of the patients concerned. Patients can tell us which providers (doctors, hospitals, other professionals) they have consulted and share their experiences with other Meopin users.

Meopin will also accompany, in the coming weeks and months, a woman affected by the Tarlov cyst, one of these rare diseases. She will tell us on our platform of her illness, but also the ordeal she must face, as well as difficulties to obtain a correct diagnosis and find the best provider possible. For reasons of health data protection, the exact name of the patient will not be disclosed. It is understood that Meopin has verified the veracity of his remarks through medical documents and others.

See you in the coming days for the first contribution of our interlocutor.

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