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...

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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...

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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...

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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 ...

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Announcements

Spinal Muscular Atrophy (SMA) – Update related to the infusions of Spinraza

Following the Press Release of April 7, 2020 regarding the postponement of some injections of the drug Spinraza in patients with Spinal...

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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...

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Announcements

BIOGEN PLANS TO INITIATE PHASE 4 STUDY EVALUATING BENEFIT OF SPINRAZA® (NUSINERSEN) IN PATIENTS TREATED WITH ZOLGENSMA® (ONASEMNOGENE ABEPARVOVEC)

BIOGEN PLANS TO INITIATE PHASE 4 STUDY EVALUATING BENEFIT OF SPINRAZA® (NUSINERSEN) IN PATIENTS TREATED WITH ZOLGENSMA® (ONASEMNOGENE...

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Announcements

Positive result announcement from HOPE – 2 clinical trial for Duchenne Muscular Dystrophy by Capricor Pharmaceuticals

Positive result announcement from HOPE – 2 clinical trial for Duchenne Muscular Dystrophy by Capricor Pharmaceuticals   One year...

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