Ed’s Foundation has joined the International Network for Sarcoma Patient Advocacy (SPAGN)

Ed’s Foundation has now joined the Sarcoma Patient Advocacy Global Network (SPAGN) in order to link up with other Sarcoma charities and to try and promote the interests of Clear Cell Sarcoma patients in this forum.

SPAGN is the leading international network of Sarcoma Patient Advocacy Organisations and provides a common, international and influential patient voice for sarcoma patients around the globe. SPAGN works to improve the treatment and care of sarcoma patients through information and support, and by increasing the visibility of sarcoma with policymakers and the public.

SPAGN hold an annual conference and this year it is in Stockholm at the beginning of May. We are looking forward to connecting with other sarcoma charities, patients and patient advocates and with a view to linking European Clear Cell Sarcoma patients together in a support network.