Portal de Murcia

www.portaldemurcia.com

• Home
• Business
• Hotels
• Restaurants
• News
• Advertisement

With a Temple of the Monastery of Jeronimos full Congress he has begun Rare Diseases organized by the Association of Rare Diseases D'Genes, in collaboration with the delegation of ERDF in Murcia and the Association of Relatives and Affected Lipodystrophies (AELIP ), which in its eighth edition was held on the campus of the Catholic University of Murcia.

In the opening ceremony intervened Pedro Antonio Sánchez, president of the CARM;

Ruben Moreno, Secretary General of Health;

Juan Carrion, president of the Spanish Federation for Rare Diseases (ERDF);

José Ballesta, mayor of Murcia;

José Luis Mendoza, president of the UCAM, and Naca Eulalia Perez de Tudela, president of the Association of Families and Affected Lipodystrophies (AELIP).

In addition, he also attended the inauguration the Minister of Health, Encarna Guillen.

About 800 people have signed up to this Congress;

about five hundred are you attending him in person, and the rest from 16 countries, made through internet.

The Secretary General of Health has announced the launch of a pilot program to accelerate the diagnosis of rare diseases.

'' They will invest 800,000 euros in this pilot project to diagnose 1,000 people without the diagnosis, and the goal is to come early to have the cause of their disease to progress in its solution. ''

Comprehensive Care Plan

For his part, President of the Autonomous Community of Murcia has said that to successfully tackle these diseases requires a new model of different intervention that is used in common, "and have already taken steps to get it. Our region has become in recent years a landmark in the diagnosis, treatment and research of these. "

Similarly, Pedro Antonio Sanchez recalled being worked in the Plan of Comprehensive Care for Rare Diseases in the Region of Murcia, aimed at ensuring specific resources, educational aspects that will facilitate curricular adaptation, and development in educational settings standard.

"A plan also includes actions in health, with special emphasis on research, diagnosis and treatment," he qualified.

UCAM 15 million in research

President of ERDF, wanted to highlight the importance of investing in research, "which is to talk about future and hope for people and families who lived with rare diseases," he said, and added that this is "the unfinished of our country. "

The president of the UCAM has confirmed its support to associations for Rare Diseases and members within each, and pointed out that the University has invested in research this year 15 million euros, mostly intended for the field of health;

In addition, the institution created last year a research chair on Rare Diseases to advance in this field.

"We are allocating a significant amount of money and resources in this area so that progress is made. Juan Carlos Izpisua being investigated in California, with the Chair who heads the Catholic, the issue of rare diseases."

Update on rare diseases

The afternoon session started with the round table 'Update on Rare Diseases' in which different experts who have been involved have exposed some recent developments Rare Diseases: Feliciano Ramos (Cornelia de Lange Syndrome);

Juana María Ballesta (DEH Hypohidrotic Ectodermal Dysplasia: update and therapeutic perspectives);

Maria del Carmen Martinez (Identification of genetic variants in patients with DEH);

María Barreda (Update research Acute intermittent porphyria);

and Maria del Rosario Domingo (VWM Cach Syndrome).

Tomorrow will be the second day of the Eighth National Congress for Rare Diseases.

At 9:30 pm, opened the morning session the round table 'New approaches to research'.

Then (11:10), Isidoro Candel, Psychologist early intervention team of the Ministry of Education, Universities and Employment, will give a presentation entitled 'Early intervention in children are rare syndromes and their families'.

Source: UCAM