NEWS

AELMHU attends the event organised by FEDER at the Assembly of Madrid

AELMHU attends the event organised by FEDER at the Assembly of Madrid

The Spanish Federation for Rare Diseases (FEDER) has organised a meeting with representatives of political parties in the Madrid Assembly for World Rare Disease Day. Our director, Marian Corral, attended the event accompanying and supporting patient associations on such a special day for them.

The MPs Marta Marbán (GPP), Gádor Pilar Joya (GPV), Vanesa Lillo (GPUP) and the MPs Jesús Celada (GPS) and Diego Figuera MP of the GPMM have participated at the table chaired by Mª Dolores Moreno Molino, Deputy Minister of Health Humanisation, and Juan Carrión, President of FEDER.

During the event, the commitment of the Regional Ministry of Health of the Community of Madrid to work on a 2nd Care Plan for People with Rare Diseases at regional level was announced.

After the event, the exhibition ' ERes Arte' was inaugurated by the President of the Assembly of Madrid, Eugenia Carballedo Berlanga, the President of the Federation, Juan Carrión, and the CEO of Sanofi, Raquel Tapia. Through a series of photographs, an attempt has been made to capture what life is like for rare disease patients. The Madrid Assembly is the first venue on a route that will take the exhibition throughout Spain.