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Tag: spinal muscular atrophy

Dr. Susan Begelman on the Patient Activation Network

PAN57: Spinal Muscular Atrophy with Dr. Susan Begelman

Posted on August 13, 2019August 14, 2019 Matt CavalloLeave a commentPosted in Podcast

Spinal Muscular Atrophy (SMA) is a rare disease that affects the motor nerve cells in the spinal cord. SMA may affect a person’s ability to eat, walk, or even, breathe. SMA is also the number one cause of death in infants. In this episode, Dr. Susan Begelman discusses what causes SMA, newborn screening and hope […]

Carri Levy's Rare Disease Balancing Act on the Patient Activation Network Podcast

Protected: PAN47: Carri Levy’s Rare Disease Balancing Act

Posted on July 4, 2018 Matt CavalloPosted in Uncategorized

There is no excerpt because this is a protected post.

PAN35: MOVR Data Hub with Grace Pavlath, Ph.D.

Posted on April 9, 2018May 1, 2018 Matt CavalloLeave a commentPosted in Podcast

“This is a very interesting time in therapy development. Just in this decade alone there have been seven therapies approved which is unprecedented. If you look at the 70’s, 80’s and 90’s, there was one per decade,” reflected Grace Pavlath, PhD.  “If you look at today’s pipeline, there are 250 unique compounds in various stages. […]

Muscular Dystrophy Association with Kristin Stephenson on the Patient Activation Network Podcast

PAN34: Muscular Dystrophy Association with Kristin Stephenson, MHA, J.D.

Posted on March 29, 2018May 1, 2018 Matt CavalloLeave a commentPosted in Podcast

“If you have ever put a dollar in a boot or written your name on a shamrock at a gas station, you may have supported the MDA and we appreciate everyone who has done that. The MDA is an umbrella organization that supports 43 different disorders that are all progressive, neuromuscular diseases for which there […]

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