Advocacy tools
Selection of key documents on newborn screening
Alliance's White Paper on newborn screening for spinal muscular atrophy
In 2021, Alliance published a White Paper that summarised the current understanding and scientific consensus on neonatal screening for spinal muscular atrophy and made a case for a wider introduction of this diagnostic method population wide. The paper can be read below in selected languages.
→ English: Spinal muscular atrophy: screen at birth, save lives (version 2, 25 November 2021)
→ Português brasileiro: Atrofia muscular espinhal: Rastrear ao nascer, pode salvar vidas
→ Español: Atrofia muscular espinal: el cribado al nacer salva vidas
→ Română: Atrofie musculară spinală: Screeningul la naștere salvează vieți
We encourage you to use our White Paper in your advocacy work.
If you would like to prepare a translation into another language, please do not hesitate to get in touch.
Alliance's poster
Alliance's flyer
Affiche (en français)
Other important tools and resources
- Key Principles for Newborn Screening by EURORDIS
- Supporting Patient Advocacy for Newborn Screening: Toolkit
- A landscape assessment of newborn screening (NBS) in Europe by Charles River Associates (2021)
- Achieving Equity and Innovation in Newborn Screening across Europe
- Call to Action on Newborn Screening for Rare Diseases by Screen4Rare
- Neonatal Screening in Europe Revisited: An ISNS Perspective on the Current State and Developments Since 2010
