Announcements

Universal Health Coverage for Patients with Rare Diseases

Every year, 100 million people are driven into poverty because medical care costs much more than they could afford. Millions of people,...

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Announcements

COVID – 19 and vaccines: advices from World Muscle Society

Read the following document on advices for people with Neuromuscular Disordes and the vaccination for COVID-19 disease:...

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Announcements

MDA Hellas’s Proposal to the Ministry of Health

MDA Hellas ‘s proposal to the Ministry of Health in relation to the addition of Spinal Muscular Atrophy (SMA) in the Newborn Screening...

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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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