SEF has just signed a collaboration agreement with the Legislative Observatory of Rare Diseases and Orphan Drugs, an initiative supported by Alexion Pharmaceuticals, Inc. This observatory is made up of experts from different disciplines and is under the umbrella of the Center for Studies of Public Policies and Government (CEPPyG) of the General University of Alcalá Foundation.
The mission of this Legislative Observatory is to be able to identify the main legislative challenges that must be answered to improve the quality of life of patients with rare diseases and their families.
Under the agreement signed, our Society will collaborate in the Observatory of Rare Diseases and Orphan Drugs, with the following activities, whenever possible:
- Attendance and participation in face-to-face/telematic meetings of the Observatory.
- Active participation in the preparation of executive reports
- Validation of the documents prepared by the Observatory
- Participation in public presentations of executive reports.
You can find more information about it in the following link:
#enfermedadesraras #medicamentoshuerfanos #3millonesyanoesraro