Hospital Sant Joan de Déu
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In Madrid eighth conference «Research is progress» to celebrate Rare Disease Day 2019

Fachada del CosmoCaixa Madrid | Paseo del Prado, 36
Friday, February 22, 2019

On Thursday 28 February, CaixaForum Madrid will host the eighth edition of the conference «Research is progress» organised by CIBER Rare Diseases Networking Biomedical Research Centre (CIBERER). The meeting, which will take place within the framework of World Rare Disease Day, will bring together CIBERER researchers and patient representatives, who will focus their intervention on the search for diagnoses and new therapies. 

First, CIBERER's Scientific Director, Pablo Lapunzina, will give an overview of the in-house research to develop therapies for people with rare diseases. Subsequently, the case of undiagnosed rare diseases will be presented from the perspective of a patient and that of Beatriz Morte, Manager of CIBERER's “Undiagnosed Rare Diseases (ENoD)” project. Next, the current state of research in rare diseases in Spain will be addressed by Juan Luque, Scientific Manager of CIBERER.

The second part of the event will be moderated by the researcher Lluís Montoliu, who will focus on specific cases of collaboration between researchers, patients, and families. Also present at the event will be the Spanish association for help to people with albinism, ALBA (Asociación de Ayuda a Personas con Albinismo, in Spanish) and the Spanish Federation of Rare Diseases (FEDER), which will talk about the active participation of patients in the governing bodies of CIBERER. Finally, a round table will be held to discuss the relations between patient associations and researchers.

During the meeting, two short videos produced by CIBERER on successful cases of collaboration between researchers and patients will be premiered and the exhibition “Less Rare” (“Menos Raras” in Spanish), which describes 20 rare diseases and the research that is carried out on them in our country, will be visited.

In order to attend the conference, it is necessary to confirm attendance via email: by sending the following contact details: name, surname, mail and institution and/or reason for attendance.

Do not hesitate to enjoy this opportunity to approach reference researchers and learn directly how new projects are being developed in the field of rare diseases!

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