Organisers

SMA Europe

SMA Europe is an umbrella organisation which unites fourteen patient and research organisations focusing on spinal muscular atrophy (SMA) from 12 countries across Europe. The member organisations differ in terms of how long they have been established, in size and also in scope of activities.

The SMA Europe Board meets on a monthly basis and currently consists of 14 members and 13 deputy members.

Our aims are:

to provide a framework to stimulate collaboration,
to accelerate translational research pathways in SMA,
to promote patient care.

Co-operation between these European organisations is meant to enhance and support the existing efforts of each association by identifying areas for collaboration that are mutually advantageous:

to improve the quality of life of individuals with spinal muscular atrophy,
to promote the interests of SMA patients in European health policy;
to raise awareness of spinal muscular atrophy with the general public, healthcare practitioners, scientists and industry;
to identify, develop, promote and implement the best practice for SMA;
to promote and sustain scientific and medical research in all fields related to spinal muscular atrophy;
to increase collaboration between member countries.

More information can be found on www.sma-europe.eu

Fundacja SMA

Fundacja SMA (SMA Foundation Poland) is a patient organisation that unites those affected by spinal muscular atrophy in Poland and beyond. It was set up in 2013 with the aims of providing support to SMA families, promoting standards of care and best practices, supporting the global efforts to develop effective treatments, and raising awareness of the disorder among healthcare professionals, decision makers and the wider society.

SMA Foundation Poland is based in Warsaw, Poland and works entirely on a voluntary basis. Since 2014 it is member of SMA Europe, TREAT-NMD and EURORDIS as well as the Polish umbrella association ORPHAN.

More information can be found on www.fsma.pl (in Polish)