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.
The Alliance carries out activities in accordance with the following principles:
- This cooperation is entirely unrelated to any treatments, drugs, or products intended to be used by spinal muscular atrophy patients or their caregivers. Members are expected to uphold the highest ethical standards and should immediately disclose any conflicts of interest that may arise.
- Members work in the spirit of trust and mutual respect to ensure credibility, transparency, and independence both of SMA Europe and of each Member. This includes in particular respectful communication with all other Members including in case of disagreements. In all materials produced by the Alliance, respect for the personal dignity of people living with SMA and their families will be the highest principle.
About SMA Europe
The Founding Member of the SMA NBS Alliance, SMA Europe is an organisation that brings together 26 patient and research organisations focused on spinal muscular atrophy (SMA) from 24 countries across Europe.