Portal de Murcia
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The Congress, organized by D'Genes and the UCAM, which is being held at the Los Jerónimos Campus, is attended by health professionals, students and those affected, and is being followed live by people from more than 20 countries, especially Latin America.
More than 3 million people live in Spain with a rare disease, which is not rare, because thanks to the work of associations, health and the Administration, they are becoming more visible and more known about them.
In the Region of Murcia there are between 80,000 and 100,000 affected, 4.5% of the population faces one of the more than 8,000 rare diseases diagnosed.
The Campus of Los Jerónimos has hosted this morning the opening of the XI International Congress of Rare Diseases, organized by the Association of Rare Diseases D'Genes and the Catholic University of Murcia.
The congress, which will continue during the morning, has the collaboration of the International Association of Relatives and Affected Lipodystrophies (AELIP), the Ibero-American Alliance of Rare Diseases (ALIBER) and the delegation in Murcia of the Spanish Federation of Rare Diseases ( FEDER).
The Congress will be followed live online by people from more than 20 countries, especially Latin America.
In the inaugural act, Juan Carrión, president of FEDER, D'Genes and ALIBER and the Organizing Committee of the Congress took part;
Estrella Núñez, Vice Chancellor of Research of the UCAM;
Manuel Villegas, Health Advisor of the CARM;
Jesús Celada, General Director of Disability Policies of the Ministry of Health, Consumption and Social Welfare, and Naca Eulalia Pérez de Tudela, President of the Association of Relatives and People Affected by Lipodystrophies.
The Minister of Health, Manuel Villegas, recalled that the Region has already launched the Rare Diseases Plan, which includes more than a hundred actions that affect all fields "from the early diagnosis which is one of the most important demanded by the associations, even to convey all that is assistance, and multidisciplinary consultation.This is a plan in which not only Health but also Education has contributed.We have to go together ".
It has also indicated that 1 in 3 people who have a rare disease has a degree of disability, data that has been possible to know thanks to the Information System launched through the said Plan.
For his part, Juan Carrión, who has thanked the Catholic University of Murcia for the support shown, highlighted the participation of more than 50 speakers from different work disciplines.
On the situation of the Region with respect to rare diseases, Carrión has highlighted the impulse of a plan of comprehensive care of rare diseases model.
"In the information system we are one of the communities nationwide that has identified those Murcia who live with these diseases, and therefore Murcia provides answers to each of the needs."
For Estrella Núñez, Vice Chancellor of Research at the University, events like this allow students in the health area to know how they can help people suffering from a rare disease.
"Because the diseases they suffer are rare, but if we join them all, they make a significant number," he assured.
Similarly, he recalled the firm commitment of the UCAM for research: "We are carrying out projects of great importance such as those we are developing with Dr. Izpisua, Professor of Biology Development at UCAM and researcher at La Jolla (California). 80% of these diseases are genetic, and with Doctor Izpisua we are working on gene editing to see if the genes that cause this disease can be repaired, which opens a door to hope ".
The Congress will continue this afternoon and tomorrow with the intervention of health professionals who will analyze topics such as the main lines of current research, the latest advances in these pathologies, or the humanization of care.
Source: UCAM
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