No images? Click here

ABOUT | NEWS | EVENTS | CONTACT | DONATE

 

Now Available On-Demand

Obtaining Support and Ongoing Care for Children with Spinal Muscular Atrophy (SMA) After Gene Replacement Therapy

Parents, caregivers, family members and patients affected by SMA are invited to watch this six-part educational program where experts discuss the benefits of gene replacement therapy and methods to maintain respiratory health, improve motor function and optimize nutritional health for patients with SMA.

The multidisciplinary panel composed of clinicians, advocates, and parents of children with SMA will bring to light unique perspectives regarding the needs of patients with SMA and their families.

Watch each module on-demand today.

Module 1: Understanding Gene Replacement Therapy in SMA

  • Understand the benefits, administration and treatment outcomes of gene replacement therapy for SMA

Module 2: Life After SMA Gene Replacement Therapy

  • Learn about the beneficial effects of treatment with gene replacement therapy on patients with SMA

Module 3: Respiratory Care and SMA

  • Identify strategies and/or methods to maintain respiratory health in patients with SMA

Module 4: Rehabilitative Care and SMA

  • Identify strategies and/or methods to maintain motor function and mobility in patients with SMA

Module 5: Nutrition and SMA

  • Recognize the therapeutic importance of maintaining optimal nutrition in patients with SMA

Module 6: Shared Stories of SMA Families: The Good, Bad, and In-between

  • Communicate with other patients and families about the impact SMA has on quality of life, challenges, and best practices

Support for this program was provided by Novartis Gene Therapies.

 
 
 
 
 
FacebookTwitterYouTubeInstagramLinkedIn
NORD, a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 300 patient organization members, is committed to the identification, treatment ​and cure of rare disorders through programs of education, advocacy, research and patient services. www.rarediseases.org
55 Kenosia Ave, Danbury, CT 06810
  Forward 
Preferences  |  Unsubscribe