The #SpinrazaNOW campaign will be at Leinster house on Thursday 20th of September at 11am.
SMA sufferers and their families will be travelling from all over the country to ask Minister Simon Harris and the HSE to approve reimbursement for the life-saving drug Spinraza. Spinraza is the first ever approved treatment for the degenerative genetic condition SMA and has caused hugely significant improvements in the health and lives of sufferers treated to date.
The treatment is now available in 19 EU countries including the Benelux-A group of countries that Ireland recently became a part of. Benelux-A group are a group of nations with an agreement to negotiate on drug pricing to ensure better negotiating terms.
Please come and support us in our efforts on Thursday morning.
Date: Thursday 20th September
Time: 11am – 1pm
Location: Leinster House, Kildare Street, Dublin 2
T-Shirts: T-shirts ordered through the campaign will be available at the location.
Parking: Q-Park Setanta on Setanta Place and Q-Park Dawson Street is on Schoolhouse Lane are the nearest off-street parking. (Maps below)
There is also on street parking on nearby streets and Stephens Green. There are also car parks at Royal College of Surgeons/Stephens Green Shopping Centre and Brown Thomas.