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Parliamentary questions
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28 April 2020
Question for written answer
to the Commission
Rule 138
Stelios Kympouropoulos, Chrysoula Zacharopoulou, Isabel Carvalhais, Ivan Štefanec, José Manuel Fernandes, Milan Brglez, Kateřina Konečná, Miriam Dalli, Giorgos Georgiou, Alex Agius Saliba, Marianne Vind, Cindy Franssen, Radka Maxová, Katrin Langensiepen, Brando Benifei, Tanja Fajon, Anna-Michelle Asimakopoulou, Marisa Matias, Ádám Kósa, Josianne Cutajar, Nils Torvalds, Atidzhe Alieva-Veli, Pascal Durand, José Gusmão, Loucas Fourlas
 Subject: Rare diseases and employability

There are about 7 000 rare diseases (80 % with a genetic component) in total, which collectively affect more people than cancer. The number of people with rare diseases is estimated at over 400 million worldwide.

In the EU, rare diseases affect almost 30 million citizens. They are often chronic and progressive, with a devastating impact on a person’s well-being, quality of life and ability to perform day-to-day activities. Most people living with a rare disease have mobility problems and have to contend with profound inequalities in relation to employability and social inclusion. The Commission has committed to tackling the problems related to rare diseases by reducing disparities and inequalities in patient access to diagnosis, information and care.

How does the Commission guarantee equal and early access to effective healthcare services for people living with rare diseases, including advanced management and care, across all patient populations affected in all Member States?

What measures has the Commission taken to strengthen collaboration with all health and social stakeholders to achieve improved outcomes for rare disease patients in all Member States?

What steps is the Commission taking to ensure that persons with disabilities who have mobility problems caused by rare diseases have equal access to employment opportunities, social protection and inclusion measures across the Member States?

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