NEWS

AELMHU with FEDER at Obradoiro Square

AELMHU with FEDER at Obradoiro Square

The association has accompanied FEDER, partners and families in the event held in the Plaza del Obradoiro in Santiago de Compostela to culminate the last stage of the Camino de Santiago with the aim of raising awareness of rare diseases.

Coinciding with the celebration of the World Day for Rare Diseases, which will be held tomorrow and for the first time in Galicia, the Galician Federation of Rare Diseases, has organized an event full of symbolism for patients without diagnosis with the slogan of the campaign: 'Make time go in our favor', thus making visible the pilgrimage that families living with rare diseases until they finally know the name of the disease. Today, this journey takes an average of 4 years to complete, but in some cases it can take up to 10 years.

The participants of the march have been received in the square by the Real Banda de Gaitas de Ourense where they have been greeted by a standing ovation and thanks for organizing the meeting together with the associations, families, institutions, orphan drug industry and anonymous people who have joined the event.

Juan Carrión, president of FEDER, read, accompanied by Xosé Sánchez Bugallo, mayor of Santiago de Compostela, the manifesto of the World Day for Rare Diseases.