Spinraza -kampen fortsetter i Norge

Lise Lehrmann. Jurist, mor og representant for pårørendegruppen STOPP SMA skrev et Debatinnlegg under tittelen «Avklaring om pasientrettigheter» gir Ole Frithjof Norheim uttrykk for at det etter Bent Høies debattilsvar; «Underlige feilslutninger», nå er «klart at domstolene ikke har et rettslig grunnlag for å overprøve innholdet i helsetjenestens prioriteringer». Dette er åpenbart en ny feilslutning.

Spinraza i Norge

Muskeln für Muskeln: Run for SMA its Best!

Ob zu Fahrrad oder zu Fuß. Die Sportler von Muskeln für Muskeln zeigen Herz für die schwächsten. Conny und Kuno starten bei der TorTour de Ruhr. Die beiden Sportler haben eine beachtliche Strecke von 230 Kilometer vor sich. Seht die schöne Bilder

Pünktlich sind unsere beiden SMAider Conny Karlstedt und Kuno Cornfine heute morgen bei der TorTour de Ruhr gestartet…

Gepostet von Muskeln für Muskeln am Samstag, 19. Mai 2018

Wir wünschen schöne Pfingsten 🌷☀️


ELK GROVE VILLAGE, Ill. and SOUTH SAN FRANCISCO, Calif., May 17, 2018 (GLOBE NEWSWIRE) — Cure SMA and Cytokinetics today announced an expanded partnership to increase education, awareness and fundraising for spinal muscular atrophy (SMA).  As a National Platinum Partner for 2018, Cytokinetics will lend support to several of Cure SMA’s initiatives at both the local and national level to advance understanding of, and research toward potential treatments for SMA, a genetic disease that robs people of physical strength and takes away their ability to walk, eat or breathe.

“We have enjoyed a longstanding relationship with Cure SMA and are pleased to expand our involvements, particularly at a time when more attention and research are focused on the SMA community,” said Robert I. Blum, President and Chief Executive Officer of Cytokinetics. “We remain committed to advancing therapies for adolescents and adults with types II, III and IV SMA, a population in need of new therapies to address impaired muscle function and weakness despite the promise of gene-directed therapies.”

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