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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1st Advocacy Workshop of the Duchenne Academy

For the first time globally, the 1st Advocacy Workshop of the Duchenne Academy was held in Greece by the UPPMD Data Foundation (United...

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Physical Therapist Training Programme

As part of the training of health professionals, MDA Hellas, in collaboration with the Parent Group of Duchenne Muscular Dystrophy (DMD),...

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7/9 World Duchenne Awareness Day 2017

Under the auspices of the 4th World Duchenne Awareness Day (WDAD) on 7 September 2017, MDA Hellas and the Parents–Children with muscular...

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6-8/12/2019 – Duchenne Patient Academy

For third year in a row, Duchenne Patient Academy took place in Athens in collaboration with Data Foundation and WDO (World Duchenne...

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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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