Strategic Plan 2022-2024

The Challenge in the Global SMA Community

Despite the many advances made in screening, diagnosing and treating patients with SMA, there is still no cure today. While the world waits for a cure, patient advocacy groups can play a key role in the SMA community to provide care, support and education to patients and their families. These groups range from well-established registered non-profit organisations to a loose connection of parents with a Facebook page.

Despite all the excellent work these groups have accomplished around the world as independent organisations, even more could be done if the groups were connected and collaborated together.  It would provide great relief to many who feel isolated with seemingly insurmountable challenges to take on, in addition to the pressure and stress the disease itself brings.

In February 2020, a small group of people led by Julie Cini of SMA Australia and Fiona Tolich of Patient Voice Aotearoa, came together with one goal in mind; to help SMA patient advocacy groups (PAG) around the world develop and grow their capabilities. It was thought that if they could identify and better understand patient advocacy needs, then help and tools could be provided.

In-depth research was conducted with patient group representatives in SMA in 14 countries. A standardised questionnaire was used that focused on the groups structure, governance, goals and challenges. When the data was analysed, common themes and trends were identified. Through a design thinking process, five priorities were identified.