Obstructive Sleep Apnea and ROHHAD: Are They Connected?

by Danielle Bradshaw, In the Cloud Copy A common occurrence among children that have rapid-onset obesity with hypothalamic dysfunction, hypoventilation, and autonomic dysregulation or ROHHAD syndrome is that they’re also…

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A Prospective Study: Latent Autoimmune Diabetes in Adults and Beta-Cell Function
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A Prospective Study: Latent Autoimmune Diabetes in Adults and Beta-Cell Function

By Lauren Thayer from In The Cloud Copy Latent autoimmune diabetes in adults or LADA is a slow progressing form of autoimmune diabetes. Similar to type 1 diabetes, also an…

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Expressive Language Sampling May Lead to Treatment Options for Fragile X Syndrome
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Expressive Language Sampling May Lead to Treatment Options for Fragile X Syndrome

By Danielle Bradshaw from In The Cloud Copy Expressive language sampling, or ELS, could potentially help researchers better measure how well treatments work for patients with fragile X syndrome or…

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ICYMI: Una Nueva Encuesta Busca Respuestas Sobre Cómo COVID-19 Está Afectando a Pacientes con Enfermedades Raras en los Estados Unidos

Por Natalie Homan de In The Cloud Copy En los Estados Unidos, una enfermedad se considera "rara" si afecta a menos de 200,000 Estadounidenses en un momento dado. Las enfermedades…

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Mouse Model of Gene Therapy is Shown to be Effective Against Hemophilia A
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Mouse Model of Gene Therapy is Shown to be Effective Against Hemophilia A

By Danielle Bradshaw from In The Cloud Copy The cells of hemophilia A patients were taken and genetically modified so that they would create an active clotting factor VIII (or…

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ICYMI: A New Survey Seeks Answers About How COVID-19 is Impacting Rare Disease Patients in the United States
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ICYMI: A New Survey Seeks Answers About How COVID-19 is Impacting Rare Disease Patients in the United States

By Natalie Homan from In The Cloud Copy In the United States, a disease is considered “rare” if it affects less than 200,000 Americans at any given time. Diseases can…

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Satralizumab May Lower Neuromyelitis Optica Spectrum Disorder Relapse in Patients
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Satralizumab May Lower Neuromyelitis Optica Spectrum Disorder Relapse in Patients

By Danielle Bradshaw from In The Cloud Copy It has been shown in a recently published trial that satralizumab could potentially reduce the risk of neuromyelitis optica spectrum disorder (NMOSD)…

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Vodka as Medicine? Researcher Using Alcohol as Possible Treatment for Laryngeal Dystonia
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Vodka as Medicine? Researcher Using Alcohol as Possible Treatment for Laryngeal Dystonia

By Jodee Redmond from In The Cloud Copy Dr. Kristina Simonyan has been studying patients with laryngeal dystonia. Through the scope of her work, she has heard numerous anecdotal accounts…

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Controls Needed for the Dupuytren Biomarker Discovery Pilot Study
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Controls Needed for the Dupuytren Biomarker Discovery Pilot Study

We need controls! No, not cockpit controls or videogame controls, and no, we're not out of control. We need control participants for the Dupuytren Biomarker Discovery Pilot Study. Our goal is…

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La Prueba Thermo Fisher se Utilizará para la Detección de Genes de Gaucher, Otros Trastornos

Por Jodee Redmond de In the Cloud Copy Thermo Fisher Scientific, líder mundial en la comunidad de ciencias de la vida, ha anunciado que ha desarrollado una nueva prueba para…

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ICYMI: Financial Help Available for Rare Disease Patients Affected by the COVID-19 Pandemic
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ICYMI: Financial Help Available for Rare Disease Patients Affected by the COVID-19 Pandemic

By Natalie Homan from In The Cloud Copy The COVID-19 pandemic has changed the lives of millions around the world in an incredibly short span of time. It’s hard to…

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Industry Leaders Team Up to Advocate for Rare Disease Patients Despite the COVID-19 Pandemic
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Industry Leaders Team Up to Advocate for Rare Disease Patients Despite the COVID-19 Pandemic

By Natalie Homan from In The Cloud Copy Two businesses that advocate for patients with rare and orphan diseases announced recently that they are teaming up to help patients get…

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