20 May 2021
The revision of the EU legislation on medicines for rare diseases and for children is one of the key actions of the Pharmaceutical Strategy for Europe. Civil society now has a unique window of opportunity to propose concrete recommendations and improve the Orphan and Paediatric Regulations, writes Ingrid Stenstadvold Ross.
By Ingrid Stenstadvold Ross, an expert in health policy and strategy and secretary-general of the Norwegian Cancer Society, is the Chair of European Fair Pricing Network (EFPN)
After twenty years of being locked, the Paediatric (1901/2006) and Orphan Regulations (141/2000) are being opened. This is the golden opportunity that civil society organizations have been waiting for. Let me explain why.
EU rules to incentivize the development of medicines for children and for people suffering from rare diseases have been in place for decades. Several shortcomings need to be addressed to ensure timely access to affordable, effective, life-saving medicines addressing the specific needs of these two populations.
