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Irish Families Demand Spinraza NOW On World Rare Disease Day

Irish families demand Spinraza NOW on World Rare Disease Day

Irish families will once again march on the Dáil this Thursday 28th February to demand the Health Service Executive approve Spinraza NOW.

Families from the Republic of Ireland will once again be forced to march on the Dáil to demand that Spinraza, the only treatment available for those with SMA be made available as soon as possible.

Following on from the HSE meeting on 14th February, it has now been reported that the Health Service Executive have not recommended Spinraza be made available due to it not being cost effective and would not be a good use of HSE resources. Families are outraged and feel they have no option but to show this by once again protesting at the Dáil Éireann, Kildare Street, Dublin on Thursday 28th February which coincides with World Rare Disease Day. The protest will commence from the Dáil at 11am and go on till around 2pm.

The families want to know why 25 other European countries can approve this treatment and 43 countries worldwide, yet the HSE do not think that their children are a good use of HSE resources.

If you can help them raise awareness of their fight, please go along and support them in the day. They also ask that those attending wear white t-shirts to remember those who have been lost to SMA before any treatment is made available.

SMA Ireland website

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