Helpful resources
Aniya has 4 copies of SMN2 gene
Treated at 5 months old
Before receiving treatment with ZOLGENSMA,
Aniya received another SMA treatment.
Whether you are just exploring your treatment options or have finished treatment with ZOLGENSMA, the resources below can help wherever your family is in their spinal muscular atrophy (SMA) journey.
Treatment resources
Prenatal SMA Diagnosis Checklist
If you receive a prenatal diagnosis, learn what you can do to prepare for your child to get treatment as soon as possible.
- About SMA and gene replacement therapy
- Connecting with a support team
- Additional lab tests to prepare for
- Contacting your insurance provider to ask about plan options
Doctor Discussion Guide
A helpful resource for preparing to talk to your child’s doctor about your treatment goals:
- What you need to know about SMA
- How ZOLGENSMA can help
- Questions to ask your child’s doctor
- Safety considerations
Steps to Treating With ZOLGENSMA Brochure
Step-by-step instructions with a checklist, starting from the first day of your child's ZOLGENSMA prescription to after infusion day:
- Initial tests and screening
- Connecting with Novartis Patient Supportᵀᴹ for guidance and support
- Insurance process
- Treatment day
- Posttreatment support
Post-Appointment Flashcard
A flashcard featuring the steps you should plan to take following your child's treatment with ZOLGENSMA.
- Reminders about what to expect after treatment
- Posttreatment testing information
- Posttreatment guidance on monitoring
- Follow-up appointment calendar
A Caregiver's Guide to ZOLGENSMA
A comprehensive guide about ZOLGENSMA and SMA including:
- Facts about SMA
- How ZOLGENSMA works
- Clinical trials
- Safety
- Treatment with ZOLGENSMA
ZOLGENSMA Letter of Appeal Guide for a Self-Insured Employer Health Plan
This resource guides you through writing a Letter of Appeal after receiving a denial from a self-insured employer health plan.
It outlines:
- How to get started
- What information to include
- Practical tips for communicating with your employer
- How your child's doctor can support the appeal
While submitting an appeal does not guarantee approval, this resource is designed to help you feel more prepared and supported during the process.
Need help finding a treatment center?
You can reach out to Cure SMA or the Muscular Dystrophy Association (MDA) .
SMA & gene replacement therapy
Explaining SMA & ZOLGENSMA to Others
How to talk to others about your child’s treatment—and a diagnosis they most likely haven’t heard of:
- Facts about SMA
- How ZOLGENSMA can help
- SMA after treatment
SMA After Treatment
Your medical care team is there to help support you and your child throughout your journey. In addition to your doctor, your team might include a lung specialist (pulmonologist) and a physical therapist.
Learn about medical care team members and other support for children with SMA with the Preparing for SMA After Treatment PDF.