On Thursday, May 4, at 1:00pm EST (10:00am PST/11:00am MST/12:00pm CST), Cure SMA will hold a webinar updating the community on the status of Spinraza access. Among the topics covered will be:

  • The current status of dosing in states across the US
  • Administration sites, including information on the recent launch of our site list
  • Commercial and government insurance policies
  • The impact of Biogen’s release of the CHERISH trial data
  • Community resources and support programs

We look forward to hosting an open, candid, and informal discussion of where our community stands on issues surrounding access to this first-ever approved therapy, and what our next steps will be.

As with past webinars, we encourage you to pre-submit your questions when you register, so that we can plan to answer as many of them as possible. However, you will also have the opportunity submit questions during the webinar itself, as part of an expanded Q&A segment.

REGISTER

Spinraza Administration Site List Launched

Cure SMA has recently launched a list of Spinraza administration sites. This list currently includes over 45 sites in 26 states (including Washington DC), and the list is continually updated as new sites and added. If your local site is not listed here, please email us, or ask the site coordinator to email us, at [email protected]. Site managers must give their permission to have the site listed here.

Our goal at Cure SMA is to build this list to a few hundred active centers across the US, including multiple locations in each state, to meet the expected needs of our whole community. We have to work together to greatly increase the number of sites involved in both delivering this first-ever new SMA therapy and providing SMA care. This process will take time, and there should be the expectation of delays in gaining access to Spinraza while this process takes place.

More information on the site list and the urgent need for additional sites will be covered in this upcoming webinar. We hope you will be able to join us. A recording will also be posted within a week after the webinar.

REGISTER for the webinar