Hospital Sant Joan de Déu
Sharing to move ahead

Last newsletter of Orphanet

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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.


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