Generated by All in One SEO v4.9.1.1, this is an llms.txt file, used by LLMs to index the site. # Screen4Rare Newborn Screening ## Sitemaps - [XML Sitemap](https://screen4rare.org/sitemap.xml): Contains all public & indexable URLs for this website. ## Pages - [S4R Home](https://screen4rare.org/) - Neonatal ScreeningA life-saving tool for babies born with treatable rare disorders ABOUT USThe ultimate goalScreen4Rare’s ultimate goal is, through policy engagement, to work towards ensuring that all babies can have equitable access to newborn screening; a life-saving tool for conditions such as severe combined immunodeficiencies. Screen4Rare founding partners are: IPOPI – International Patient Organisation for - [Publications](https://screen4rare.org/publications/) - Read more about Newborn Screening 2025, Newborn Screening for Rare Diseases: How can the EU lead on the global stage? Read More2024, Newborn screening saves lives: How could the EU support Member States in the next institutional mandate Read More2022, Newborn screening as a fully integrated system to stimulate equity in neonatal screening in Europe. - [MEP Interest Group](https://screen4rare.org/mep-interest-group/) - MEPThe 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. ObjectivesThe goal of MEP Alliance for Rare Disease Newborn Screening is to work towards the realisation - [Call To Action](https://screen4rare.org/calltoaction/) - Call to Action – Newborn Screening for Rare DiseasesThe European Union’s (EU) added value in the field of rare diseases is well known. From the European Reference Networks (ERNs) to the EU research funding programmes, positive strides have been taken on health-related matters. Extrapolating best practices from Member States has also played a crucial role - [What is NBS?](https://screen4rare.org/nbs/) - What is newborn screening?WHAT DOES NEONATAL SCREENING MEAN FOR PATIENTS?Timely access to diagnosis, treatment and care!Neonatal screening, called newborn screening (NBS) in some countries, was initiated in Europe and the US during the 1960s. Since then, new newborn screening has touched the lives of many families and their babies around the world. With a simple - [Cookie Policy](https://screen4rare.org/cookie-policy/) - S4R Cookie Policy Our website screen4rare.org uses cookies to ensure the optimized functioning of the website, to distinguish you from other users of our website and to assess how you interact with the website. This helps us provide you with a good experience when you browse our website and also allows us to improve our site. - [Privacy Policy](https://screen4rare.org/privacy-policy/) - Screen 4 Rare (hereinafter “we” or “S4R”) is a multi-stakeholder initiative launched by the International Patient Organisation for Primary Immunodeficiencies (IPOPI), the International Society for Neonatal Screening (ISNS) and the European Society for Immunodeficiencies (ESID). S4R cares about your privacy and treats personal data with the strictest confidentiality and always in accordance with the - [Founding Members](https://screen4rare.org/founding-members/) - Meet the Founding MembersScreen4rare was founded by IPOPI, ISNS, and ESID. These organisations meet regularly to set Screen4Rare’s overarching strategy and guide the development of various workstreams within the initiative. The International Patient Organisation for Primary Immunodeficiencies (IPOPI) is the association of national patient organisations dedicated to improving awareness, access to early diagnosis and optimal - [About Us](https://screen4rare.org/about/) - VisionScreen4Rare is a multi-stakeholder platform launched by the International Patient Organisation for Primary Immunodeficiencies (IPOPI), the International Society for Neonatal Screening (ISNS), and the European Society for Immunodeficiencies (ESID) aiming to exchange knowledge and best practices on NBS for rare diseases. The group’s ultimate objective is, through policy engagement, to work towards ensuring that all - [International Neonatal Screening Day](https://screen4rare.org/insd/) - The International Neonatal Screening Day (INSD) is an international initiative launched by the International Society for Neonatal Screening (ISNS), the International Patient Organisation for Primary Immunodeficiencies (IPOPI) and the European Society for Immunodeficiencies (ESID), working in partnership under the multi-stakeholder Screen4Rare platform to promote the importance of neonatal (newborn) screening. The first INSD was celebrated - [ERN Expert Platform](https://screen4rare.org/ern-expert-platform/) - On 14 September 2021, representatives of the European Commission, European References Networks (ERNs), and Screen4Rare1 officially launched the ERN Expert Platform for Newborn Screening. The objective of the platform is to promote newborn screening (NBS) across the EU and develop a mechanism of ERN cooperation with the goal of implementing Screen4Rare Call to Action on - [Events Calendar](https://screen4rare.org/events-calendar/) - Upcoming Events JulyAugust 2026September MOTUWETHFRSASU 272829303112345678910111213141516171819202122232425262728293031123456 Past Events October 2022 16 - 20 Oct APHL Newborn Screening Symposium, Tacoma (WA), USA Sunday EVENT DETAIL 15 - 21 Oct 11th ISNS Int. Symposium / APHL 2023 Newborn Screening Symposium Saturday EVENT DETAIL 12 - 16 Oct 20th Biennial Meeting ESID, Gothenburg, Sweden Wednesday EVENT DETAIL August - [EU Health Policy Platform](https://screen4rare.org/eu-health-policy-platform/) - EU Health Policy PlatformThe EU Health Policy Platform (HPP) is an online platform created to share ideas, knowledge and expertise. HPP allows users to create specific stakeholder platforms to allow for knowledge exchange. Thus, Screen4Rare has a stakeholder platform on HPP which is utilised by S4R members to distribute information and collect pertinent news, research, - [Media](https://screen4rare.org/media/) - Multimedia Content about NBSThe European Union’s (EU) added value in the field of rare diseases is well known. From the European Reference Networks (ERNs) to the EU research funding programmes, positive strides have been taken on health-related matters. Extrapolating best practices from Member States has also played a crucial role and it is undoubtedly clear ## Fusion Elements - [event](https://screen4rare.org/fusion_element/event/)