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The Region of Murcia, world-wide reference in the study of rare diseases (24/11/2017)

The president of the UCAM has expressed his intention to create a Research Chair in Lipodistrofias

With the Temple of the Monastery of Los Jerónimos full began this morning the X International Congress of Rare Diseases, organized by the Association D'Genes and the Catholic University of Murcia, with the collaboration of the Association of Relatives and Affected Lipodystrophies (AELIP), D'Genes X Frágil, the Ibero-American Alliance for Rare Diseases (ALIBER) and the Spanish Federation of Rare Diseases (FEDER).

They have also participated affected by rare diseases and relatives, who have narrated their experience in front of it;

all have agreed on the need to continue researching in this field and be able to get an early diagnosis.

In addition, they recalled that in the Region there are 85,000 people who suffer from a rare disease.

The inauguration was closed by José Luis Mendoza Pérez, president of the UCAM;

Fernando López Miras, president of the Autonomous Community of the Region of Murcia;

Carlos Moreno Sánchez, General Director of Professional Management of the Ministry of Social Services, Health and Equality;

Juan Carrión Tudela, president of D'genes and of the Organizing Committee of the Congress;

Naca Eulalia Pérez de Tudela, president of the Association of Relatives and Affected of Lipodistrofias, and David Sánchez González, delegate of FEDER in Murcia.

Integral plan

Mendoza has announced its willingness to launch, with the help of researcher Juan Carlos Izpisua and his team, a Research Chair on Lipodystrophy that will allow further progress in this field.

During his speech, he has addressed future health professionals, saying: "on your way you will meet people with rare diseases, help them, work from love".

In addition, he recalled the strong commitment of UCAM to research, especially in the area of ​​health and sports.

For his part, the president of the Autonomous Community thanked the Association D'Genes his great work that has allowed "to place the Region of Murcia worldwide as a benchmark in the study of rare diseases, and UCAM," that with effort and commitment carries out initiatives like these ".

He also highlighted the strong involvement of the Community with this group.

"The Comprehensive Plan for Rare Diseases will be released in 2018 and will improve people's lives so that no one is left behind.

Juan Carrión Tudela, president of D'genes, has defined this Congress as a framework to be able to speak about the future and hope, and has highlighted the great work that is being developed in the Region with respect to rare diseases.

Carlos Moreno, General Director of Professional Management of the Ministry of Social Services, Health and Equality, said that from the establishment he represents work every day to improve and give better quality of life to sick people, "from a multidisciplinary point of view , with the investigation at the head ".

Investigation

During the inauguration, all agreed on the importance of research.

For David Sánchez González, delegate of FEDER in Murcia, "if there is something important, it is the attention to those affected and their families, and to be able to continue investigating".

In the same line has been Naca Eulalia Pérez de Tudela, president of the Association of Relatives and Affected of Lipodystrophies, who has highlighted the important role played by future professionals "in which we put our hopes."

Presentations

More than sixty speakers will participate in the different tables, which will analyze and address, among other issues, new routes of treatment in rare diseases, regional actions of comprehensive care in rare diseases, updates in the diagnosis of rare diseases, orphan drugs or related social aspects with the pathologies of low prevalence.

Also, workshops on non-pharmacological therapies such as music therapy, early care, psychology or social networks have been organized.

In addition, other related events such as the V Symposium of Lipodystrophies and the III Congress of Fragile X Syndrome will also be held within the framework of the X Congress.

Source: UCAM

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