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Insurance Denials in Rare Disease Care: Systemic Flaws in Coverage
Insurance denials create devastating barriers for rare disease patients, delaying essential treatments and driving up costs. This article explores systemic flaws in coverage policies, the appeal process, and new reforms aiming to improve equity and access to rare disease care.
The Rare360 Editorial Team
Sep 24, 20259 min read
A Closer Look at Spinal Muscular Atrophy: Symptoms, Types, and Management
Spinal Muscular Atrophy (SMA) is a rare genetic disorder that affects the motor neurons, leading to muscle weakness and atrophy.
The Rare360 Editorial Team
Sep 17, 20259 min read
The Economics of Rare Diseases: How Financial Burdens Impact Patients and their Families
Rare diseases don’t just affect health—they place overwhelming financial and emotional strain on patients and caregivers. From costly treatments to lost wages, this article uncovers the hidden burden of rare diseases and why systemic policy change is critical.
The Rare360 Editorial Team
Sep 2, 20258 min read
Rare Disease Families Are on the Frontlines of Climate Change
This article explores how climate change is deepening the crisis for rare disease patients worldwide, and why the path forward must include policies and protections tailored to this uniquely at-risk population.
The Rare360 Editorial Team
Aug 29, 202512 min read
Digital Biomarkers: A Transformational Tool for Rare Disease Management
Digital biomarkers are unlocking earlier detection, real-time monitoring, and personalized interventions for rare disease patients, reshaping how we diagnose and manage these complex conditions.
The Rare360 Editorial Team
Aug 12, 20256 min read
Genetic Fix or False Hope? The Reality of Gene Therapy in Rare Conditions
Explore the reality of Gene Therapy in rare conditions. Is it a genetic fix or false hope?
The Rare360 Editorial Team
Aug 11, 20258 min read
Managing Dialysis When You Have a Rare Kidney Disorder
Dialysis can be different for people living with rare kidney disorders. Learn what to expect, how to navigate challenges, and find hope for the future.
The Rare360 Editorial Team
Jul 24, 20256 min read
Tragic Updates from Sarepta’s Gene Therapy Programs
Tragic deaths in Sarepta’s gene therapy trials have deeply impacted the rare disease community, raising concerns about liver risks, FDA responses, and treatment access.
The Rare360 Editorial Team
Jul 23, 20255 min read
Inside the Orphan Drug Act: Incentives Fueling Rare Disease Therapies
This article breaks down what the ODA is, why it matters, the challenges that remain, and what patients and caregivers need to know to advocate for continued progress in rare disease care.
The Rare360 Editorial Team
Jul 21, 20257 min read
Montana’s Medical Experimentation Law: A New Frontier—or a Dangerous Gamble?
Explore Montana's Medical Experimentation law. Is it a groundbreaking step or a risky gamble?
The Rare360 Editorial Team
Jul 11, 20253 min read
Custom Gene Editing Saves Infant with Rare Metabolic Disorder
In a groundbreaking first, doctors developed a custom gene- editing therapy in just seven months to treat a baby with a deadly and ultra-rare metabolic disorder.
The Rare360 Editorial Team
Jun 11, 20252 min read
CHOPS Syndrome: Discovering the Complexities of a Rare Genetic Condition
Discover the complexities of CHOPS syndrome, a rare genetic disorder impacting multiple body systems.
The Rare360 Editorial Team
Mar 3, 20256 min read
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