Resources

ENMC Poster Newborn Screening Alliance Congress Budapest.pdf

292nd ENMC workshop: Best practices after positive Spinal Muscular Atrophy newborn screening

CT Site Readiness - Poster for Orlando - June 23.pdf

Clinical Trials Readiness in Europe. Scientific Poster. Cure SMA Conference. Orlando 2023.

CT Workshop Poster - Orlando 2023.pdf

Clinical Trials Workshop Scientific Poster. Cure SMA Conference. Orlando 2023.

2026 Congress_Research Priorities_Poster for advocates.pdf

Congress Research Priorities Poster for advocates - From Questions to Impact: Community-Driven Research Priorities in SMA

2026 Congress_Research Priorities_poster_final.pdf

Congress Research Priorities poster: From Questions to Impact: Community-Driven Research Priorities in SMA

Congress 2022 EUPESMA 2019.pdf

EUPESMA 2019 - European Patient Experience Survey in SMA. Scientific Poster. 3rd Scientific Congress on SMA. Barcelona 2022.

Congress 2022 poster EUPESMA 2021.pdf

EUPESMA 2021 – European Patient Expectation Survey in SMA. Scientific Poster. 3rd Scientific Congress on SMA. Barcelona 2022.

259_EUPESMA25.pdf

European Patient Experience Survey in SMA (EUPESMA 2025): Treatment access, perceptions, and future needs

260_EUPESMA23.pdf

Experiences of Clinical Trial Participation in SMA: Insights from a Pan-European SMA Europe survey

Congress 2022 Fatigue, Pain, & Psychological problems.pdf

Impact of Fatigue, Pain and Psychological Problems on Perceived Quality of Life in Paediatric SMA Patients. Scientific Poster. 3rd Scientific Congress on SMA. Barcelona 2022.

2026Congress_Medical emergencies_poster_final.pdf

Medical Emergencies in SMA: 1 st International Clinical Care Symposium

TAMAÑO A0_ 221006_SMA Europe poster congress OdySMA_2022_final_A0.pdf

OdySMA - SMA Europe Advocacy Tool. Scientific Poster. 3rd Scientific Congress on SMA. Barcelona 2022.

230530_SMA Europe poster CureSMA congress OdySMA_2023_ng_lg.pdf

OdySMA 2023. Scientific Poster. Cure SMA Conference. Orlando 2023.

261_OdySMA SMA Europe poster congress Budapest_2026.pdf

OdySMA – Tracking access to SMA treatment and care through quantitative and qualitative data

2026_ECRD_Poster_DIGITAL_14MAY.pdf.pdf

Patients in the lead: embedding patient-led processes across advocacy domains at SMA Europe

PSP Poster for Orlando -  23 May 2023.pdf

Priority Setting Project. Scientific Poster. Cure SMA Conference. Orlando 2023.

S95_MDA2024_RESTORE_Vent_Support_FINAL.pdf

Real-World Outcomes Following Onasemnogene Abeparvovec  in Patients with Spinal Muscular Atrophy and Invasive  Ventilatory Support: Findings from the RESTORE Registry

256_Daily Life Study_Final.pdf

Real-time digital measurement of patient-experienced outcomes: An intensive longitudinal study in adults living with spinal muscular atrophy

263_System level barriers_ reimbursement gaps_ crowdfunding Member Survey SMA Europe poster congress Budapest_2026.pdf

System-level barriers, reimbursement gaps, and crowdfunding: insights from the SMA Europe Member Survey

262_The OdySMA Nations League_Descriptive benchmarking of system level access to therapies and care across Europe SMA Europe poster congress Budapest_2026.pdf

The OdySMA Nations League: Descriptive benchmarking of system-level access to therapies and care across Europe

Congress 2022 Daily Life Study.pdf

The SMA Daily Life Study. Scientific Poster. 3rd Scientific Congress on SMA. Barcelona 2022.

CureSMA2023_Daily Life Study_FINAL.pdf

The SMA Daily Life Study. Scientific Poster. Cure SMA Conference. Orlando 2023.

Congress 2022 Type 0.pdf

Type 0. Scientific Poster. 3rd Scientific Congress on SMA. Barcelona 2022.

Ukrainian SMA registry. Scientific Poster. 3rd Scientific Congress on SMA. Barcelona 2022.

255_EUPESMA25_Untreated - V2.pdf

When treatment either stops or never starts: Characteristics and experiences of people living with SMA in Europe

Scientific Posters by SMA Europe

Abstract Book - Barcelona 2022.pdf

Abstract Book. 3rd Scientific International Congress on Spinal Muscular Atrophy

Abstract Book Ghent 2024.pdf.pdf

Abstract Book. 4th Scientific International Congress on Spinal Muscular Atrophy

Congress26_poster and talk abstracts info_v2.pdf

Abstract Submission Guidelines for Posters and Oral Presentations

13Call_Research_2026_Eligibility&Procedure_final2.pdf

Call for Research 13 Eligibility and Procedure

SMA Europe Annual Report 2024.pdf

SMA Europe Annual Report 2023

SMA Europe official documents & reports 

CT workshop paper - jnd_221538.pdf

Clinical trial readiness for spinal muscular atrophy: experience of an international educational-training initiative

41591_2024_Article_3484 (3) 2.pdf

First-in-human study of epidural spinal cord stimulation in individuals with spinal muscular atrophy

Treatment & Clinical Trial resources

Advances 2024 in SMN1-related proximal SMA_AFM Telethon.pdf

AFM Télethon publication: Advances 2024 in SMN1-related proximal spinal muscular atrophy

NBS-Dangouloff-ENMC-2019.pdf

NBS Dangouloff ENMC 2019

<p>244th ENMC international workshop: Newborn screening in spinal muscular atrophy, May 10&ndash;12, 2019, Hoofdorp, The Netherlands</p>

Living with SMA: guides & resources

Congress 2022 A decision for life.pdf

A Decision for Life – pathway to treatment decisions in newly diagnosed families with SMA. Scientific Poster. 3rd Scientific Congress on SMA. Barcelona 2022.

Advances_SMA.pdf

Advances in research 2026 Spinal muscular atrophy (SMA)

The need for evidence-based treatment decisions in spinal muscular atrophy. Annals of Translational Neurology..pdf

Annals of Translational Neurology. "The need for evidence-based treatment decisions in spinal muscular atrophy."

Disease Burden & Patient Treatment ExpectationsNMD 2017.pdf

Disease impact on general well-being and therapeutic expectations of European type 2 and 3 spinal muscular atrophy patients. The first pan-European survey.

EUPESMA Survey on SMA and Clinical Trials.pdf

EUPESMA Survey on SMA and Clinical Trials

A Decision for Life e Treatment decisions in newly diagnosed families. European Journal of Paediatric Neurology..pdf

European Journal of Paediatric Neurology. "A Decision for Life - Treatment decisions in newly diagnosed families."

s13023-026-04588-9_reference.pdf

From questions to impact in spinal muscular atrophy - identifying community-driven research priorities through a multi-stakeholder European initiative

Impact of Fatigue, Pain, and Psychological Problems on Perceived Quality of Life in Pediatric SMA Patients. Thieme Connect..pdf

Neuropediatrics 2021. "Impact of Fatigue, Pain, and Psychological Problems on Perceived Quality of Life in Pediatric SMA Patients."

SMA_EUPESMA_Interactive_FINAL.pdf

SMA_EUPESMA_Interactive_FINAL

schroth-et-al-2024-SMA-update-in-best-practices_treatment_considerations_NCP (002).pdf

Spinal Muscular Atrophy Update in Best Practices Recommendations forTreatment Considerations

Systematic Literature Review of the Natural History of SMA.pdf

Systematic Literature Review of the Natural History of Spinal Muscular Atrophy

The SMA Europe Call for Research Proposals.pdf

The SMA Europe Call for Research Proposals

The diagnosis communication process in SMA_paper.pdf

The diagnosis communication process in spinal muscular atrophy: A cross-cutting view of the new challenges facing the therapeutic era.

The emerging spectrum of neurodevelopmental comorbidities in early-onset SMA_Baranello_Eur J Paediatric Neurol_2023.pdf

The emerging spectrum of neurodevelopmental comorbidities in early-onset Spinal Muscular Atrophy

Publications 

FIREFISH Five-Year Update_Cure SMA Research & Clinical Care Meeting 2024.docx.pdf

Resources

Scientific Posters by SMA Europe (25)

SMA Europe official documents & reports (5)

Treatment & Clinical Trial resources (2)

Living with SMA: guides & resources (2)

Publications (15)

Community Letters & Updates (5)

Communication & Marketing Resources (3)

Categories

Scientific Posters by SMA Europe (25)

SMA Europe official documents & reports (5)SizeFormatUpdated

SMA Europe official documents & reports (5)

Treatment & Clinical Trial resources (2)SizeFormatUpdated

Treatment & Clinical Trial resources (2)

Living with SMA: guides & resources (2)SizeFormatUpdated

Living with SMA: guides & resources (2)

Publications (15)SizeFormatUpdated

Publications (15)

Community Letters & Updates (5)SizeFormatUpdated

Community Letters & Updates (5)

Communication & Marketing Resources (3)SizeFormatUpdated

Communication & Marketing Resources (3)

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