SMA Newsroom

Nov 24, 2022

European Day of Persons with Disabilities

Meet Lassi! Lassi is a delegate for SMA Finland.

On this European Day of Persons with Disabilities 2022, Lassi speaks about the challenges that different countries face, and the necessity for Europe to be united while ensuring that access to treatment is universal.

All together, one goal.

15th Anniversary.

ResearchNov 21, 2022

New publication: Validation of a Set of Instruments to Assess Patient- and Caregiver-Oriented Measurements in Spinal Muscular Atrophy.

Validation of a Set of Instruments to Assess Patient- and Caregiver-Oriented Measurements in Spinal Muscular Atrophy: Results of the SMA-TOOL Study.

Outcome measures traditionally used in spinal muscular atrophy (SMA) clinical trials are inadequate to assess the full range of disease severity. The aim of this study was to assess the psychometric properties of a set of existing questionnaires and new items, gathering information on the impact of SMA from the patient and caregiver perspectives.

Nov 17, 2022

Newborn Screening Alliance: Whitepaper in Spanish and Portuguese

You can now find new translations of Newborn Screening Alliance Whitepaper in Spanish and Portuguese.

Nov 16, 2022

"Nutrition in SMA" workshop, 21st November

Roche, in collaboration with SMA Europe, is hosting the ‘Nutrition in SMA’ workshop with an expert panel of HCPs and patient representatives, to discuss the challenges surrounding nutritional care in SMA.
 
Join the discussion!