MEP

The MEP Alliance for Rare Disease Newborn Screening (the S4R MEPs) is an informal MEP Group that brings Members of the European Parliament together to raise awareness and prioritise newborn screening for rare diseases policies at the EU level.

Objectives

The goal of MEP Alliance for Rare Disease Newborn Screening is to work towards the realisation of the Screen4Rare Call to Action on Newborn Screening for Rare Diseases, which places an emphasis on the following policy objectives:

  • Develop and implement overarching guidelines in the field of newborn screening for rare diseases.
  • Work together within the European Commission Steering Group on Health Promotion and Prevention to develop an EU-wide platform on newborn screening for rare diseases and pool from the expertise of recognised societies working in the field.
  • Cooperate to position the EU as the central point for data collection and information on rare diseases newborn screening practices and encourage the exchange of best practices that would support Member States’ efforts in the development of newborn screening practices according to the existing science, knowledge, and know-how.

Through legislative and awareness-raising efforts means, members of the MEP Alliance for Rare Disease Newborn Screening seek to identify opportunities for discussing and submitting policy proposals pertaining to an EU approach to newborn screening for rare diseases. The long-term goal of the group is to take part and contribute to raising awareness of the activities of the ERN Expert Platform for Newborn Screening as well as the potential future European newborn screening standing committee. Opportunities are identified during biannual meetings.

Members

Cyrus Engerer

S&D, Malta

Cyrus Engerer is a member of both the Special Committee for Beating Cancer as well as the Committee on the Environment, Public Health and Food Safety, and has been an MEP since 2019. He is the co-chair of the Mental Health Europe coalition and a strong advocate for LGTB+ rights.

Deirdre Clune

EPP, Ireland

Kateřina Konečná has been a full-time MEP since 2014, during which she has served on the Special Committee for Beating Cancer, is a supporter of Health First Europe and has worked on multiple health legislations, including the Health Technology Assessments in-vitro Medical Device regulations. She is a champion of the European Patients Forum Campaign on Access to Healthcare and has a history of supporting patient organisations.

Kateřina Konečná

GUE/NGL, Czechia

Kateřina Konečná has been a full-time MEP since 2014, during which she has served on the Special Committee for Beating Cancer, is a supporter of Health First Europe and has worked on multiple health legislations, including the Health Technology Assessments in-vitro Medical Device regulations. She is a champion of the European Patients Forum Campaign on Access to Healthcare and has a history of supporting patient organisations.

Maria Carvalho

EPP, Portugal

Maria da Graça Carvalho is a professor and Portuguese politician with a long history of EU health work. She served a senior advisor to the Commissioner for Research, Science and Innovation from 2014-2015, before which she was an MEP from 2009-2014. Again an MEP, Carvalho is active in health topics, including acting as the co-chair of the MEP Heart group, forum chair of Knowledge4Innovation and rapporteur on Horizon Europe.

Sirpa Pietikäinen

EPP, Finland

Sirpa Pietikäinen has been an MEP since 2008, with a primary focus on environmental and social issues. A supporter of Health First Europe, an MEP Against Cancer (MAC), member of the EP Working Group on Reproductive Health, HIV/AIDS and Development, member of the MEP Heart Group and member of MEP Alliance for Mental Health, she has made clear her commitment to supporting health causes.

Stelios Kympouropoulos

EPP, Greece

Dr. Stelios Kympouropoulos joined Parliament in 2019, where he has been an ardent supporter of disability rights. A clinical psychiatrist, he also co-founded the non-profit i-living (Independent Living Organisation of Greece), which promotes independent living for people with disabilities.

Tudor Ciuhodaru

S&D, Romania

Dr. Tudor Ciuhodaru, a physician, has been an MEP since 2019. He is a supporter of Health First Europe, an MEP Against Cancer and a member of the MEP Alliance for Mental Health. He is a member of both the Special Committee for Beating Cancer as well as the Committee on the Environment, Public Health and Food Safety.