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The meeting host to numerous families affected and associations as well as leading experts in the field
On 18 and 19 October will be held at the Executive Hotel The Sixth National Congress on Rare Diseases in Totana (Murcia), organized by the Spanish Federation for Rare Diseases and Rare Diseases Association and other severe developmental disorders (D'Genes) .
The aim is to standardize and raise awareness on the situation of people with rare diseases.
To this end, the meeting host to numerous families affected with rare diseases as well as leading experts in the field.
The inauguration will, on the one hand, with an institutional event in which leading authorities will be present with the President of ERDF, D.
Juan Carrion and President of D'Genes, Naca Eulalia Pérez de Tudela.
Moreover, there will be a table of rare diseases testimonies, moderated by the President of D'Genes, in which four people will speak about their experiences.
In addition, the Mutual Aid Group "Hidden Roles" of the delegation ERDF Extremadura held a theatrical performance.
Juan Carrion, President of ERDF, states that "I want to show my gratitude to all organizations and entities that have made it possible for a year takes place this Congress is a meeting point for families of people affected by pathologies little Frequently "
"We invite everyone with a rare disease and their families attending the Sixth National Congress, a reference place to share concerns and experiences with people who are in a similar situation to yours.
In addition, there will be many different presentations that will be of help to both patients and their families as for partnerships "says Naca Eulalia Pérez de Tudela, President of D'Genes.
The inaugural conference will Teresa's hand Pampols, Senior Consultant, Section of Inborn Errors of Metabolism, Department of Biochemistry and Molecular Genetics, Hospital Clínic - IDIBAPS of Barcelona, ​​who will speak on "databases diagnostic clinical laboratories rare diseases as a valuable information tool for all involved. "
Moreover, the image of rare diseases in the Spanish media will now approach by experts as Antonio M Bañon and Juan Manuel Arcos, University of Almería, Josep Solves, Cardenal Herrera University, and Sebastian Sanchez of the University of Seville.
Among the papers to be carried out is the round table entitled "Bringing the lab to the street" in which topics such as the work of a molecular biologist, genetic and acquired lipodystrophy, or orphan drugs.
Furthermore, along the Sixth National Congress held lipodystrophies I International Symposium.
Source: FEDER
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