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World Rare Disease Day, Reus

Yolanda Fernández, from the Lovexair Foundation patient advisory group, attended the conference held on March 16 in Reus, to commemorate World Rare Disease Day

 

We attended the Conference held in Reus on the occasion of the World Day for Rare Diseases

 

Yolanda Fernández, from the Lovexair Foundation patient advisory group, attended the conference held on March 16 in Reus, to commemorate World Rare Disease Day. Yolanda who has been diagnosed with interstitial lung disease with hypersensitivity to the environment and allergic to all kinds of birds, she attended this appointment as a listener to see how knowledge about rare diseases improves.

Although on this occasion, the representation of patients was a minority, it was possible to see that more and more health professionals are interested in this type of pathology, since many primary care doctors, nurses and university students attended this information session .

In this sense, it is worth highlighting the important role played by primary care physicians when it comes to anticipating a possible rare disease, in addition to the follow-up and support that health professionals provide to affected people and their families. On the other hand, it is worth noting the training received by university students on these minority pathologies, since according to the Study on the situation of Social and Health Needs of people with Rare Diseases in Spain (ENSERio), 56% of those interviewed acknowledge having received a inadequate treatment. For this reason, it is essential to expand knowledge about these diseases.

Yolanda Fernández, as a patient diagnosed with interstitial lung disease with hypersensitivity to the environment, has highlighted the clarity of the presentations presented at this conference, since informative sessions of this type allow us to expand knowledge about these rare pathologies, and, in turn, exchange opinions with other patients and healthcare professionals.

By way of conclusion, Yolanda pointed out that thanks to attending these types of presentations, she obtains up-to-date information about her disease, as well as the advances that are being made to have a better quality of life.