- About EURORDIS
- About Rare Diseases
- Rare Disease Policy
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- What is an orphan drug?
- Improve the safety of your medicines
- Compassionate Use
- Role of EURORDIS
- Patient advocates involvement
- Access to orphan drugs
- Health technology assessment
- EURORDIS Round Table of Companies (ERTC)
- List of the latest marketing authorisations and orphan medicinal products designations
- Living with a Rare Disease
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Newborn Screening Working Group (NBS-WG)
The EURORDIS Newborn Screening Working Group (NBS-WG) was set up to review current policy and practice in the field of NBS, in order to develop principles for harmonious uptake/adoption of the NBS programs across the Member States with a view to delivering maximum benefit and improving outcomes for babies born with rare diseases.
Members of NBS-WG include representatives from patient organizations, international screening societies and international and national federations with a focus on NBS.
| Name | Organization | Country |
| Anna Kole | EURORDIS | France |
| Clara Hervas | EURORDIS | Belgium |
| Cor Oosterwijk | VSOP | The Netherlands |
| Domenica Taruscio | Istituto Superiore di Sanità | Italy |
| Eduardo Lopez | Spanish association for lysosomal acid lipase deficiency (AELALD) | Spain |
| Francesca Forzano | European Society of Human Genetics (ESHG) | United Kingdom |
| Gulcin Gumus | EURORDIS | Spain |
| Jayne Spink | Genetic Alliance UK | United Kingdom |
| Johan Prevot (observer) | IPOPI | Portugal |
| Johanna Pfeil | The European Foundation for the Care of Newborn Infants (EFCNI) | Germany |
| Laetitia Ouillade | SMA Europe | France |
| Luc Zimmermann | The European Foundation for the Care of Newborn Infants (EFCNI) | Germany |
| Manuela Vaccarotto | Associazione Italiana Sostegno Malattie Metaboliche Ereditarie (AISMME) | Italy |
| Mark Turner | University of Liverpool | United Kingdom |
| Martina Cornel | Amsterdam UMC | The Netherlands |
| Patricia Arias | FEDER | Spain |
| Simona Bellagambi | UNIAMO | Italy |
| Valentina Bottarelli | EURORDIS | Belgium |
| Virginie Bros-Facer | EURORDIS | France |
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The voice of rare disease patients in Europe
The international voice of people living with rare diseases
Bringing together patients, families and experts to share experiences in a moderated multi-language forum.
The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.
An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiative
Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiative
The international voice of people living with rare diseases
Bringing together patients, families and experts to share experiences in a moderated multi-language forum.
The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.
An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiative
Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiative