Asebio And the Institute of Health Carlos III join to boost the investigation in rare illnesses

The Spanish Association of Bioempresas (Asebio) and the Institute of Health Carlos III have taken advantage of the celebration during the day of today of the World-wide Day of the Rare Illnesses to announce the signature of an agreement of collaboration for the development of activities related with the rare illnesses in the areas of investigation, register, dissemination and learning.

The agreement foresees performances that boost the knowledge and the investigation of these illnesses, as well as improvements in the mechanisms of register and follow-up of the patients.

Both organisations coincide in that the public collaboration-private is a key factor to the hour to give answer to these little known pathologies, in whose diagnostic and treatment participates actively the industry bio-technological.

The Spanish Association of Bioempresas has a Group of Work of Rare Illnesses, coordinated by Fernando Royo, composed by 37 companies, four foundations, two institutes of investigation, a technological centre, a scientific park, the Ciberer and the Ciber-BBN, that analyses the implications of the sector in the fight against these pathologies.

Thanks to the work and to the coordination of this Group, Asebio forms part of the Group of Work of rare illnesses of the Council Adviser of the Ministry of Health. Between some of the entities partners of Asebio that are investigating tra-tamientos for rare illnesses stand out:

 • Worthy Biotech with the compound P144 for the treatment of is it-clerodermia, the CT-1 for the isquemia and reperfusion in transplante renal and for the porphyria the Vector AAV-gene of porphyria

 • Ciberer With Lentiviral Vector-Fanca gene for the anaemia of Fanconi

 • Bionaturis With the BNT-001 for illnesses by lysosomal storage

 • Esteve with the Vector AAV-sulfamidasa gene also for disorders by lysosomal storage

 • Valentia with the VLT 001 for dystrophy miotónica

 • PharmaMar With Yondelis for sarcoma of relative soft fabrics to translocationes and in combination in first line

 • Advancell With to the ATH008 for eritrodisestesia palmar-plant

 • Minoryx, centred in illnesses neurometabólicas of genetic origin

 • Advanced Medical Projects Centred in disqueratosis congenital.

 • Praxis, with Terfiqec, for fibrosis quística.