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Parliamentary questions
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19 September 2019
Question for written answer E-002889-19
to the Commission
Rule 138
Sandra Pereira (GUE/NGL)

 Subject:  Paramiloydosis
 Answer in writing 

Familial amyloid polyneuropathy (FAP) is a rare, genetically transmitted neurodegenerative disease that affects around 500 families in Portugal, mainly in the north, Lisbon and in the Serra da Estrela.

The first signs of FAP appear in patients at the age of 20 and the disease severely limits the lives of those affected. Treatment is through a liver transplant, which can take years and cause complications later on in life. A new, highly effective form of medication has recently been discovered, although unfortunately it is not yet available to all patients. There is thus a need to strengthen the role of public health and funding to ensure universal access to medication.

What initiatives could be promoted at EU level to make it easier and cheaper for national authorities to access medication (e.g. negotiations with pharmaceutical companies)?

What aid is available to carry out further research into the disease, investigate possible treatments and find a cure so that medication can be developed that more effectively responds to the different stages of FAP?

Does the Commission share our concerns that the public should be made aware of new developments and products in the area of pharmacology that are not tied in with the commercialisation of health and profits?

Original language of question: PT 
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