Hospital Sant Joan de Déu
Sharing to move ahead

Last newsletter of Orphanet

Logotipus Orphanews
Wednesday, April 22, 2015

On the 21 th of April, was published the last newsletter of Orphanews Europe, in which there are involved a group of experts on rare diseases.

Among the contents to be highlighted in the latest edition, stands out:

  • National Plan for Rare Diseases of the Czech Republic (2015-2017).
  • Paediatric Institute of Rare Diseases in the Hospital Sant Joan de Deu (Barcelona).
  • Proposition of a public consultation to include new genetic tests in the Health System of the United Kingdom (NHS).
  • Orphan drug legislation in Latin America.
  • Conclusions of the study on supportive care needs of parents caring for a child with a rare disease.
  • Description of new syndromes and genes affected by a mutation and involved in the manifestation of a rare disease.
  • Presentation of new research lines.

The newsletter is available on the following link.

 

Last modified: 
04/30/2015