Common questions

Common questions

How do I get Evrysdi?

Evrysdi is shipped directly to you by a specialty pharmacy.* Evrysdi is not available at a retail pharmacy.

What should I do if there is an issue with my order, or if any of the contents of my shipment (bottles, oral syringes, etc.) are damaged?

Contact your specialty pharmacy representative right away.

What should I do if my bottle of Evrysdi is leaking?

If you notice leakage on any bottle, dry off the bottle with a dry paper towel then rinse the closed bottle with water. Store the bottle out of sight and out of reach of children. Call Genentech Product Complaints at 1-800-334-0290 to coordinate your free replacement and further instructions. If Evrysdi gets on your skin, wash the area with soap and water. If Evrysdi gets in your eyes, rinse your eyes with water.

*Specialty pharmacies are not part of Genentech and maintain independence in their operations and in their role as a healthcare provider.

How long can Evrysdi be stored in the refrigerator?

The medication lasts up to 64 days after being prepared by a pharmacist. An expiration date will be indicated on the bottle of Evrysdi. It may be helpful to mark that date on your calendar. If you receive a bottle without the Discard After date written on the bottle label, contact your specialty pharmacy.

What should I do if Evrysdi has been left at room temperature?

Evrysdi can be kept at room temperature up to 104°F for a combined total of 5 days. It can be removed from, and returned to, a refrigerator. The total combined time out of refrigeration should not exceed 5 days. Any portion of Evrysdi that has been kept above 104˚F should be discarded.

If you have any questions regarding storing Evrysdi at room temperature, contact your specialty pharmacy.

How should I store Evrysdi while traveling?

If you or the person in your care will be away from home, store Evrysdi in an insulated cooler (36°F to 46°F with ice packs), but do not freeze it. Store Evrysdi upright in the original amber bottle to protect it from light. If traveling by plane, your healthcare provider may give you a letter authorizing you to fly with liquid medication. Talk to your healthcare provider about the best way to travel with Evrysdi.

How much medicine do I take every day?

Your recommended dose is based on age and weight, with a maximum recommended dose of 5 mg once daily, which is a little over a teaspoon. Your doctor determines your dose. Always take your dose exactly as prescribed. If you have questions, speak to your healthcare provider.

Can I take Evrysdi with food or mix it with liquid outside of the oral syringe?

Evrysdi should be taken after a meal. It should not be mixed directly with any food or liquid (including formula or breast milk), and should only be taken with the approved oral syringe, which has been designed to protect the solution from light.

Will the syringes that come with Evrysdi work with feeding tubes?

Yes. Each monthly shipment of Evrysdi will include syringes that will work with a variety of feeding tubes, including ENFit®. If the specialty pharmacy does not provide the correct adapter to fit your feeding tube, they will work with you to get one that does.

What should I do if my child spits up, vomits, or doesn’t swallow the whole dose after I give the medication?

Do not give any more medication that day. Wait until the next day to give the next dose at the usual dosing time. If your child continues to spit up or vomit while taking Evrysdi, talk to your healthcare provider.

What if a dose is missed?

The missed dose should be taken as soon as possible, but no more than 6 hours after the usual dosing time. If more than 6 hours have passed, skip the missed dose altogether and take or give the next dose the following day at your regularly scheduled time.

Who should I call if I have other questions about Evrysdi?

Your healthcare provider should always be your main resource for any questions about your health and medical care. You can also contact MySMA Support to connect with a PAL, who can answer questions about Evrysdi, and refer you to helpful resources. PALs can also help you understand your insurance and financial support options. Contact MySMA Support at (833) 387-9734 (Monday-Friday, 9 AM to 8 PM ET).

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Getting started on Evrysdi

A guide to help you get started with Evrysdi treatment

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We can help

What is Evrysdi?

Evrysdi is a prescription medicine used to treat spinal muscular atrophy (SMA) in children and adults.

  • Before taking Evrysdi, tell your healthcare provider about all of your medical conditions, including if you:
    • are pregnant or plan to become pregnant, as Evrysdi may harm your unborn baby. Ask your healthcare provider for advice before taking this medicine
    • are a woman who can become pregnant:
      • Before you start your treatment with Evrysdi, your healthcare provider may test you for pregnancy
      • Talk to your healthcare provider about birth control methods that may be right for you. Use birth control while on treatment and for at least 1 month after stopping Evrysdi
      • Pregnancy Registry. Talk to your healthcare provider right away if you become pregnant while taking Evrysdi. Ask about registering with the Evrysdi Pregnancy Registry, which was created to collect information about your health and your baby's health. Your healthcare provider can enroll you in this registry by calling 1-833-760-1098 or visiting
    • are an adult male. Evrysdi may affect a man’s ability to have children (fertility). Ask a healthcare provider for advice before taking this medicine
    • are breastfeeding or plan to breastfeed. It is not known if Evrysdi passes into breast milk and may harm your baby
  • Tell your healthcare provider about all the medicines you take
  • You should receive Evrysdi from the pharmacy as a liquid. If the medicine in the bottle is a powder, do not use it. Contact your pharmacist for a replacement
  • Avoid getting Evrysdi on your skin or in your eyes. If Evrysdi gets on your skin, wash the area with soap and water. If Evrysdi gets in your eyes, rinse your eyes with water
  • The most common side effects of Evrysdi include:
    • For later-onset SMA:
      • fever
      • diarrhea
      • rash
    • For infantile-onset SMA:            
      • fever
      • diarrhea
      • rash
      • runny nose, sneezing, and sore throat (upper respiratory infection)
      • lung infection (lower respiratory infection)
      • constipation
      • vomiting
      • cough

These are not all of the possible side effects of Evrysdi. For more information on the risk and benefits profile of Evrysdi, ask your healthcare provider or pharmacist.

You may report side effects to the FDA at 1-800-FDA-1088 or You may also report side effects to Genentech at 1-888-835-2555.

Please see full Prescribing Information for additional Important Safety Information.

    • Información de prescripción de Evrysdi® (risdiplam). Genentech, Inc.

      Información de prescripción de Evrysdi® (risdiplam). Genentech, Inc.