Search Results for: Magnus

Developmental Milestones of Magnus under the treatment of Spinraza

I write this message with pleasure in English, so that anyone can read it. Now the most beautiful news of the day. Magnus has his 4th dose Spinraza behind and the 17 year old boy shows clear improvement While Denmark refuses to recognize Spinraza as standard therapy, going Magnus’ parents… Att fortsätt läsa

Congratulations to Magnus, he will be treat with Spinraza in another country

In his own country (Denmark), he was denied access to the only treatment for spinal muscular atrophy. Now having the parents a positive message. Her son Magnus 17 years old is being treated with Spinraza in Belgium. He has now received the 2 injection via lumbar puncture. He feels already… Att fortsätt läsa

Den første danske familie tænker på at flytte til Tyskland på grund af en Spinraza behandling

Familien Mortensen rejser til Spanien imorgen undersøge muligheden for at få Spinraza der. Hvis Spinraza virker, vil familie flytte til Tyskland, selvom søskende ikke er glade. Tyskland er det eneste land, der også behandler børn og unge med respirator. I Tyskland lever nogle ældre teenagere med SMA type 1, men… Att fortsätt läsa

Medicinrådet har besluttet: Mirakelmedicin Spinraza får kun patienter med SMA Typ I

There will be no standard therapy for SMA available for all SMA forms This decision makes us very sad. Not everyone gets the chance in Denmark to a standard-standart-therapy with Spinraza in Denmark. The Danish Medicinrådet has decided. The miracle drug get only children with SMA type 1, but it… Att fortsätt läsa