Landet runt på SVT visar ett inslag

Landet runt - Karma era barn - Ta mig tillbaka

Programmet Landet runt på SVT uppmärksammade Ellie Risfalks initiativ med sin dansföreställning Ta mig tillbaka – Ellies berättelse där hon dansar för sin sjuka barndomskompis Saga Rixer för att sprida medvetenhet och samla in pengar till stöd för forskningen kring sjukdomen Sanfilippo typ C.

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Övrigt

Inbjudan årsmöte

Härmed välkomnas alla medlemmar att närvara vid föreningens årsmöte. Datum: 29 maj 2023, Kl.16.30Plats: Drottninggatan

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Information

Världsdagen för Sanfilippos sjukdom 16 november

Världsdagen handlar om att sprida medvetenhet och starta konversationer runt om i världen om

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Sanfilippo Community Conference

Kostnadsfri Virtuell konferens 7-8 Juli som samlar familjer, vårdgivare, forskare, läkare, terapeuter, förespråkare, biotekniker

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