Antoni Riera-Mestre, member of the Internal Medicine Service of the Bellvitge-Idibell University Hospital.
improve the assistance y competitiveness in spain to jump to Europa is the spearhead that Spanish Society of Internal Medicine (SEMI) will address this week in the XII Meeting of Minority Diseases. Through a format round tables the invited experts will discuss the existing difficulties in gaining access to European networks, the main therapeutic novelties and how can a better focus to the patient suffering from this class of pathologies.
The meeting, which will begin on May 12 at the Palace of Congresses of Ibiza, has been satisfied not only with internists, but also with experts from other specialties interested in this type of disease. Antoni Riera-Mestremember of the Internal Medicine Service of the Bellvitge University Hospital–Idibell and coordinator of the meeting, affirms in Medical Writing that the approach to rare diseases “should not be carried out from the point of view of a single specialty, in order to achieve a much more complete approach with regard to the patient”.
One of the most important activities during the XII Meeting will be the master conference about the research in rare diseases in spain and create links in Europa. As stated by Riera-Mestre, “Spain is one of the countries that has more difficulties to access European networks. Care for rare diseases is guided by European networks, the European Reference Networks, where there are several areas that encompass different groups of pathologies. The way to access them in Spain is that the Ministry of Health believe you like CSUR (Centers, Services and Reference Units). There are more than 6,000 rare diseases, it is difficult for all of us to be accredited, which is why very prepared people have difficulties accessing Europe”.
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“Spain is one of the countries that has the most difficulties in accessing European networks” |
The conference will be attended by Paul Lapunzinadirector of the Center for Biomedical Research in Rare Diseases Network (Ciberer), which is part of the Carlos III Health Institute. With the presence of Lapunzina, Riera-Mestre hopes “to know his assessment in order to have access to Europe, while improving research in Spain on rare diseases. Another step we must take is to create connections y synergies in between us, find resources etc. Ciber has to know us as a group to see the power that exists in our country of doctors who are specialized and interested in these diseases. The Carlos III Institute is a dynamic organ research to improve assistance and competitiveness in Spain to access Europe”.
New therapeutic scenarios in rare diseases
Know and stay up to date with all news that have appeared within minority diseases will be another aspect to be discussed at the meeting. “Each year we organize a therapeutic novelty table in new drugs if they are already marketed to add value within the group. At each table we want know the news about each rare diseaseso we will analyze the different therapeutic scenarios existing, such as gene therapies and the drugs that reach silence RNA. On the other hand, passive talks will not be held, but at all times we seek the knowledge sharing y experiences. To do this, people who have participated in different trials have been invited, analyzing their benefits and limitations”.
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“Different existing therapeutic scenarios will be analyzed, such as gene therapies or drugs that silence RNA” |
The ethic within minority diseases will also be the protagonist of the meeting. As stated by the coordinator of the Minority Diseases Working Group, “it is an element that we always try to transmit and that we cannot lose sight of, since we have a commitment to patients. Research at all times has to be oriented towards the benefit of the patient, so we must go hand in hand with industry in a transparent way and that you can talk about it openly”.
Residents, a key piece in dealing with rare diseases
The youth is the future within Health, and SEMI will carry out on Saturday the III Meeting of Minority Diseases for residents. With this initiative, Riera-Mestre seeks to “encourage its publications and promote the training of these specialists. If stimuli are not generated, people are not interested, and we have noticed a huge change in these meetings with the participation of a large number of young people who are committed to addressing these pathologies”. Over the years, knowledge and interest in rare diseases has increased in crescendoand those invited to the meeting hope to make the final leap to Europe to certify a new stage more than hopeful.
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