Tel: 01789 267520

Waiting for a Place on the UK Nusinersen Expanded Access Programme for SMA Type 1?

04 July 2017

Please help progress access to the programme by letting SMA Support UK know about your child and where you live so that we can discuss the national picture with clinicians and NHS funding bodies.

Please complete and return this form.

You can email it to or phone 01789 267520, text your answers to 07436 793586 or send a private message through Facebook with the details to us. We will store this information securely. It will not be used for any other purpose.

  • If you are waiting for an appointment with GOSH, you don’t need to complete this form.
  • If you have been travelling to Paris or another EU country for treatment and are not covered by GOSH, please do complete the form.

Please feel free to share this with anyone else you know who may be interested.

Thank you.