The Mayor of Totana, Isabel Maria Sanchez, has accompanied this morning Totana families in commemoration of World Rare Disease has been chaired by the regional chief executive, Ramón Luis Valcárcel.
The President of the Autonomous Community has encouraged associations representing families affected by rare diseases and to continue to work in coordination with the Administration to advance research and become "more visible" to society.
The Chief Executive in Murcia Murcia chaired the ceremony commemorating the World Day of Rare Diseases, held in the Palacio de San Esteban, and in which he praised the important work done by the associations to seek the support and backing institutions and society in general.
Valcárcel considered "fundamental" role of the associations to be able to recognize these diseases and thus pave the way for those who need information or support.
In this regard, President Valcarcel said that "thanks to the work of organizations have made significant achievements in the whole society and the involvement of institutions, we now know of the need to promote research in this area, the search for new treatments and therapies to help patients to normalize as much as possible their lives. "
Thus, the president acknowledged that while "we have a long way to go", this way, he said, "be fruitful to the extent that we walk together: patients, families, administration, public and private institutions, researchers, doctors, nurses and caregivers. "
In this regard, Valcárcel highlighted the important work that has been done in Murcia through this partnership with associations such as the implementation of the Information System on Rare Diseases in the Region, which continues to deepen in their development, increasing the number of cases collected and cooperating with other institutions.
An important network database
The commitment to this information system in the region has enabled the number of information sources, reaching six: the Minimum Data Set (MDS) of public and private hospitals, the center of clinical biochemistry and genetics, registration kidney diseases, prescription drugs, drug dispensing and foreign database of people with disabilities and handicaps.
Therefore, Valcarcel said, "the experience accumulated in the region of Murcia has not gone unnoticed by the Spanish Network of Rare Disease Registries for Research, who has invited us to be part of it."
Moreover, "because being in this national network today are on the front line of research by participating in the project funded by the Carlos III Health Institute, the International Consortium for Research on Rare Diseases," he added.
Thus, to be in the first line of information "will allow us to continue building research projects shine new hope for patients and their families."
Health diagnosed more than 4,000 rare diseases in hospitals in the region each year, of the 8,000 existing pathologies.
The Ministry of Health and Social Policy, through the Directorate General of Planning, Pharmaceutical and Health Planning and Research, has been carrying out epidemiological studies since 2008.
The latest study has identified a total of 33,763 new cases of rare diseases, representing an average of 4,220 cases per year and a rate of 31 new cases per 10,000 population per year for the entire period.
Throughout this period has shown a slight increase in the number of new cases of about three percentage points, due to increased interest and concern for these diseases.
By sex, the number of new cases of rare diseases is slightly higher for women, with a rate of 31.6 versus 30.4 for males.
By age, the maximum values ​​correspond to the age groups of 70 and more years.
