Last newsletter of Orphanet
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.
