IVIG: What Families Need to Know

In this session, learn about IVIG (immunoglobulin therapy administered by vein):

  • What is IVIG?
  • When do doctors consider IVIG as a treatment?
  • What can you and your child expect during an infusion?
  • What are the tips for the day of the IVIG treatment?
  • What do you need to know about insurance?

This session features:

  • Dr. Fatma Dedeoglu of Boston Children’s Hospital
  • Huub Kreuwel Ph.D., of Octapharma Plasma
  • Patient advocate Michelle Vogel, of CSI Pharmacy
Affordable and Accessible Treatments for JM

Affordable and Accessible Treatments for JM

Two special guest speakers, Michelle Vogel, MPA, IV Solutions RX, and Laurel Cherwin, BSN, RN, IgCN, Octapharma, shared information on navigating affordable treatments and care for JM patients.

The FDA’s Ruling on Vamorolone in DMD

You may have heard about yesterday’s FDA ruling, which approved vamorolone as an alternative steroid for use in Duchenne muscular dystrophy.

Vamorolone is a new steroid alternative with fewer side effects than prednisone. The drug aims to preserve the beneficial anti-inflammatory and muscle-strengthening characteristics of corticosteroids, while decreasing some of the unwelcome side effects, including bone fragility, delayed growth, and behavior changes.

As we learned in yesterday’s announcement, vamorolone was found to be both safe and effective as a therapy for Duchenne muscular dystrophy in its newly approved indication.

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