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Parliamentary questions
PDF 41kWORD 9k
21 January 2020
E-000325/2020
Question for written answer
to the Commission
Rule 138
Sirpa Pietikäinen
 Answer in writing 
 Subject: Huntington’s disease – rare disease

Huntington’s disease is a rare genetic neurodegenerative and, ultimately, fatal disease that has a devastating impact on families across generations. It strikes between the ages of 30 and 50, inhibits a person’s ability to work, care for their family and eventually perform day‑to‑day tasks. It affects up to 10 in 100 000 people in Europe.

The Commission has contributed to raising awareness of rare conditions. However, disparities between care and treatment across the EU, and inaccurate prevalence rates (partly due to social stigma), still exist.

With regard to diseases such as Huntington’s, what steps is the Commission taking to improve their recognition and visibility?

What steps is it taking to fund and encourage research and innovation projects in the field?

How can the EU help national healthcare systems to have sufficient resources to ensure high‑quality healthcare services for these patients?

Original language of question: FI
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