Announcements, Featured

“What I want is bigger that what I can do” Aimilia Plati

Writer Aimilia Plati, supports us by donating all the proceeds to MDA Hellas (Association for people with neuromuscular diseases). You...

Read More →

Announcements, Featured

Covid-19 – PRECAUTIONS FOR PEOPLE WITH NEUROMUSCULAR DIDEASES

Covid-19 – PRECAUTIONS FOR PEOPLE WITH NEUROMUSCULAR DIDEASES   Dear Members, According to the available scientific data regarding the...

Read More →

Announcements, Featured

Result Announcement of clinical trial EPYDIS, phase III, for Givinostat, Italfarmaco Group

Result Announcement of clinical trial EPYDIS, phase III, for Givinostat, Italfarmaco Group Italfarmaco Group announced the recommendation...

Read More →

Announcements, Featured

FIREFISH clinical trial of Risdiplam in neonates with SMA I, Roche Pharmaceuticals

1 year data presentation from FIREFISH clinical trial of Risdiplam in neonates with SMA I, Roche Pharmaceuticals ...

Read More →

Announcements, Featured

EURORDIS – Rare Barometer, patients with rare diseases share their experiences in COVID 19

A new rare barometer survey related to patient experiences in COVID 19...

Read More →

Announcements, Featured

Important information for patients with SPINAL MUSCULAR ATROPHY (SMA)

2/4/2020 Press Release INFORMATION ABOUT PATIENTS WITH SPINAL MUSCULAR ATROPHY (SMA) It is with great pleasure that we announce the arrival...

Read More →

Announcements, Featured

Eurordis – Rare Diseases and COVID-19

Rare Diseases community and Eurordis raises alert over discrimination in critical care guidelines during COVID-19 pandemic and urges...

Read More →

Announcements, Featured

W.M.S – World Muscle Society, COVID-19 Update 02-04-2020

Amendments to the original document text – Update 02-04-2020  Covid-19 and people with neuromuscular disorders:  World Muscle...

Read More →

Announcements, Featured

W.M.S. – World Muscle Society, COVID-19

Covid-19 and people with neuromuscular disorders: World Muscle Society position and advice...

Read More →