Transitioning from Pediatric to Adult Care

In this presentation, join Rodolfo Curiel, MD, FACP, FACR, and Rebecca Sadun, MD, Ph.D., review strategies for parents to aid JM kids in their transition from pediatric to adult care.

The transition aims to optimize health and assist youth in reaching their full potential. Common steps to prepare for transition include:

  • Establishing a policy
  • Tracking progress
  • Administering transition
  • Conducting readiness assessments
  • Planning for adult care
  • Transferring and integrating into an adult practice

Preparing for the transition to adult care may begin with patients beginning to take an age-appropriate role in their care as early as the tween years.

Featuring:

Rodolfo Curiel, MD, FACP, FACR is the Program Director of the Rheumatology Fellowship, Division Director, Director of the GW Myositis Center and Associate Professor of Medicine at The George Washington University Medical Faculty Associates. The GW Myositis Center was created with the help of a generous grant from Cure JM.

Rebecca E. Sadun, MD, Ph.D., is a pediatric and adult rheumatologist at Duke University, a Cure JM Center of Excellence. 

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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