New Podcast Episode: Epilepsy and Unmet Need, feat. The LGS Foundation and Ovid Therapeutics
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New Podcast Episode: Epilepsy and Unmet Need, feat. The LGS Foundation and Ovid Therapeutics

Patient Worthy's award-winning podcast "Wait, How Do You Spell That? A Rare Disease Podcast" is back with a new episode. This week, Colby is sitting down with Dr. Tracy Dixon-Salazar,…

Continue Reading New Podcast Episode: Epilepsy and Unmet Need, feat. The LGS Foundation and Ovid Therapeutics
New Podcast Episode: 50 Years of Supporting the TSC Community, feat. TSC Alliance President and CEO Kari Rosbeck
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New Podcast Episode: 50 Years of Supporting the TSC Community, feat. TSC Alliance President and CEO Kari Rosbeck

Patient Worthy's award-winning podcast "Wait, How Do You Spell That? A Rare Disease Podcast" is back with a new episode. This week, Colby is sitting down with Kari Rosbeck, the…

Continue Reading New Podcast Episode: 50 Years of Supporting the TSC Community, feat. TSC Alliance President and CEO Kari Rosbeck
New Podcast Episode: The Importance of IPF Clinical Trials, feat. Patient Advocate Murray Walz
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New Podcast Episode: The Importance of IPF Clinical Trials, feat. Patient Advocate Murray Walz

Patient Worthy's award-winning podcast "Wait, How Do You Spell That? A Rare Disease Podcast" is back with a new episode. This week, Colby is sitting down with Murray Walz, a…

Continue Reading New Podcast Episode: The Importance of IPF Clinical Trials, feat. Patient Advocate Murray Walz
New Podcast Episode: Rare Cancer, Finances and Families, Featuring Tony Laudadio of the Tony Foundation
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New Podcast Episode: Rare Cancer, Finances and Families, Featuring Tony Laudadio of the Tony Foundation

We are excited to announce that Patient Worthy's award-winning podcast "Wait, How Do You Spell That? A Rare Disease Podcast" is back with a new episode. This week, Colby is…

Continue Reading New Podcast Episode: Rare Cancer, Finances and Families, Featuring Tony Laudadio of the Tony Foundation

Editor’s Choice: Developments In Beta Thalassemia, Eosinophilic Esophagitis and Congenital Adrenal Hyperplasia

Happy Friday! This week, we have details on an investigational compound for beta thalassemia. Also, we break down the details of a new study that examines psychiatric illness rates among…

Continue Reading Editor’s Choice: Developments In Beta Thalassemia, Eosinophilic Esophagitis and Congenital Adrenal Hyperplasia
First CAR T-Cell Therapy for Multiple Myeloma Cleared for Use in Japan
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First CAR T-Cell Therapy for Multiple Myeloma Cleared for Use in Japan

According to a press release from the pharmaceutical company Bristol Myers Squibb, the company's CAR T-Cell therapy idecabtagene vicleucel (marketed as Abecma) has been approved by the Japanese Ministry of…

Continue Reading First CAR T-Cell Therapy for Multiple Myeloma Cleared for Use in Japan

Editor’s Choice: Can Machine Learning Help Rare Patients Get Diagnosed and Treated Faster?

Happy Friday! October is Dysautonomia Awareness Month. Dysautonomia is a collection of conditions that affect the autonomic nervous system. This can lead to a loss of control of the body's…

Continue Reading Editor’s Choice: Can Machine Learning Help Rare Patients Get Diagnosed and Treated Faster?