SMA Europe e.V.
Budget
€2,363,727
EP Access
0
accredited persons
Staff
2
0.75 FTE
EU Grants
None
Mission & Goals
SMA Europe is a non-profit umbrella organisation of spinal muscular atrophy (SMA) patient organisations who work together to bring earlier diagnosis, effective treatments and optimal care to everyone living with SMA (people living with SMA, family members and carers). The purpose of the Association is to promote the health, health care and well-being of people living with SMA, and to promote science and research in all areas of life affected by SMA, from diagnosis to treatment, care, and daily life activities.
EU Legislative Interests
European Alliance for Newborn Screening - The European Alliance for Newborn Screening in Spinal Muscular Atrophy demands that by 2025, newborn screening programmes in all European countries include a test for spinal muscular atrophy for all newborn children. In order to bring about this vision, SMA Europe has established the European Alliance for Newborn Screening for Spinal Muscular Atrophy. The Alliance brings together all the stakeholders who share the above vision and are willing to work together towards making it a reality. The overarching objective of this cooperation is to decrease the time it takes for a child born with spinal muscular atrophy to be diagnosed, and to assist patient advocacy groups worldwide in their efforts to accelerate the identification of such children, given that early diagnosis and treatment of spinal muscular atrophy leads to significantly better health outcomes. In order to achieve its aim, the Alliance undertakes a variety of activities, including but not limited to producing a White Paper on SMA newborn screening and engaging with health authorities across Europe. These activities develop as the Alliance’s work progresses and are always based on science and aimed at ensuring the best interest of the patient. https://www.sma-screening-alliance.org/
Communication Activities
Alliance's White Paper on newborn screening for spinal muscular atrophy: In 2024, the Alliance published an updated 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. https://nbs-alliance-assets.gpm.digital/SMA_White_Paper_NBSA_2024_EN_e91bb03c79.pdf Webinar on newborn screening techniques for spinal muscular atrophy: https://www.youtube.com/watch?v=Jh0iJLL_7Hs&t=4s
Interests Represented
Does not represent commercial interests
Member Of
EMA - https://www.ema.europa.eu/en/partners-networks/patients-consumers/eligible-patients-consumers-organisations EURORDIS - https://download2.eurordis.org/membership/members.pdf ENMC - https://www.enmc.org/our-supporters/member-organisations/ EUPATI - https://eupati.eu/partnership/ CURE SMA (US) - https://www.curesma.org/sma-industry-collaboration/ CURE SMA India - https://www.curesmaindia.org/our-partners/ University of Pittsburgh Rehab Neural Engineering Labs - https://www.rnel.pitt.edu/scs-sma SMATHERIA - https://www.smatheria.org/media/smabeyond-beneficiaries_partners_1.jpg
Organisation Members
SMA Europe members - https://www.sma-europe.eu/our-members SMA Europe Partnerships - https://www.sma-europe.eu/our-partners
Connected Legislation
Commissioner Meetings
No recorded meetings with EU commissioners.