The Alliance
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.
Membership
Any party that has a legal representation in Europe and a justified interest in the aforementioned aims may become a member of the SMA Europe NBS Alliance, contingent on an approval granted by SMA Europe.
In particular, members may include patient organisations, learned societies, academic institutions, academic networks, public and private health insurance providers, public bodies, not-for-profit organisations active in the field of healthcare or patient support, and pharmaceutical and medical technology companies.
Founding member
Members
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.
Read the full Alliance Charter
About SMA Europe
The Founding Member of the SMA NBS Alliance, SMA Europe is an organisation that brings together 23 patient and research organisations focused on spinal muscular atrophy (SMA) from 22 countries across Europe.
SMA NBS Alliance Steering Committee
The Alliance is governed by a Steering Committee made up of a Chairperson, academics, and patient advocates. The main responsibilities of the Steering Committee are to develop, approve and monitor the implementation of the annual Action Plan. The Steering Committee meets quarterly.
Current members
(Chair) Marie-Christine Ouillade
Patient advocate affiliated with AFM Téléthon and SMA Europe
Dr Eduardo Tizzano
Specialist in paediatrics and medical genetics at Vall d’Hebron University Hospital, Barcelona, Spain
Gulcin Gumus (PhD)
Research & Policy Project Manager at EURORDIS
Jana Popova
Patient advocate affiliated with EAMDA and European Patients’ Forum
Kacper Rucinski
Co-founder and long-time President of SMA Foundation Poland, former Board Member of SMA Europe
Special expert advisors to the Steering Committee
Dr Raquel Yahyaoui Macías
Clinical biochemistry specialist, clinical laboratory geneticist and newborn screening expert at Hospital Regional Universitario de Málaga; Editorial Board Member of the International Journal of Neonatal Screening.
Cornelis Boersma
CEO and Founder at Health-Ecore | Professor, Sustainable Health and Innovation, Open University | Co-Founder, Digital Health Link | Co-Founder, SensUR Health | UMCG-University of Groningen
Maarten Postma
Professor in pharmacoeconomics at the University of Groningen (Netherlands), Department of Pharmacy, Unit of PharmacoEpidemiology & PharmacoEconomics.
