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The purpose of SMA Europe is to provide a framework to stimulate collaboration and accelerate translational research pathways in SMA and promote patient care.

  1. European Policy & Access Tracker for SMA launched today

    European Policy & Access Tracker for SMA

    Charles River Associates (CRA) conducted a comparative assessment of the policy and access landscape for people living with SMA across 23 European countries.

    The project has been funded by Biogen and implemented in collaboration with us. The development of the policy and access analysis builds on a secondary desk research conducted between November 2020 and January 2021, with a latest update in April 2021. The findings include publicly available information sources and country information based on a survey conducted by SMA Europe. Information collected was reviewed and validated by Biogen colleagues and SMA Europe member organisations from each country in scope.

    The focus of the comparative assessment is to characterise several key policy and access areas that impact the management of SMA patients. This includes the status of access to innovative treatments and care, as well as to patient support.

    The main objectives of this comparative assessment have been to:

    • Identify areas for improvement both within and across countries and
    • Develop country-by-country summaries of the policy and access landscape for SMA patients.

    The findings are illustrated in a Policy and Access Tracker and have been used to develop a White Paper, which includes a consolidated set of policy recommendations that can be used to advocate for improvements at the national and European level.

    Through its pan-European patient experience survey, SMA Europe collected evidence indicating that access to treatment is heterogeneous throughout its 23 European member countries; lack of access to existing treatment is greatly impacting patients’ well-being. SMA Europe is therefore proud to have collaborated on this important evidence-based initiative which will help overcome existing inequalities, contributing to its overall goal of improving access to diagnosis, optimal treatment and care for all people living with SMA in Europe and beyond” said SMA Europe President, Nicole Gusset

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