The importance of giving visibility to Rare Diseases

February 28 is World Rare Disease Day, with the aim of giving visibility and raising awareness in society about their existence and the impact they have on the lives of those who suffer from them and their families.

A disease is considered rare when it affects a limited number of the total population, defined in Europe as less than 5 per 10,000 inhabitants (Source: ENSERio Study).

In addition to giving visibility to these diseases, we want to raise awareness that anyone can suffer from a disease of this type at any time in their life. It is not so rare to have a rare disease.

Today, there are more than 6,000 different rare diseases. The main problem is reaching a diagnosis due to different causes: ignorance of the disease, having access to specialized centers, etc. This late diagnosis means that the disease has worsened on many occasions.

For all these reasons, the more knowledge and information there is about these pathologies, the better, since the more one knows, the more likely it is to detect them at an early stage.

Rare Disease Figures:

• A patient takes an average of 4 years to obtain a diagnosis.
• More than 3 million Spaniards suffer from these diseases
• About 50% of patients need to travel for their treatment or in search of diagnoses
• 9% of cases need adaptations in the home
• 23% of cases have to resort to personal assistance.

From the migranodearena Foundation we want to help and make all these diseases known and make it possible to improve conditions and treatments, as well as get a diagnosis as soon as possible.

We have many NGOs that help these patients and their families, and many challenges currently active in their favor to raise funds. Here we list some of them:

We encourage you to contribute your help in the investigation and treatment of these diseases!