With this public consultation, citizens and stakeholders are invited to share their views and experiences on the main obstacles they are facing concerning treatments for rare diseases and children, on possible ways to overcome these obstacles and on how to make the current legislation future-proof.
Stakeholders and members of the public, including patients and doctors, are welcome to contribute to this consultation. Organisations representing patients and civil society active in public health, healthcare professionals and providers, academia, researchers, and the pharmaceutical industry may also have an interest to contribute.
This initiative will explore several options to address the shortcomings identified in the evaluation of the Regulations on medicines for children and rare diseases, in view of a revision of the existing legislation.
TEDDY Network has participated to the first round of this consultation promoting the implementation of joint solutions to harmonise and optimise procedures, incentives and rewards addressed to paediatric and orphan medicinal products. It also underlined the need to include policy options aimed at guarantying the implementation of the fundamental and children rights while promoting research on ethical and legal and social issues (ELSI) covering both paediatric and rare diseases.
See TEDDY’s comments here.