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News Briefs


5 days ago3 min read
FDA's Diversity Guidance Withdrawal Sparks Concerns Over Clinical Trial Inclusivity
In a controversial move, the FDA has quietly removed its draft guidance on clinical trial diversity, sparking concerns over inclusivity.


Jan 213 min read
The Genetic Puzzle Solved: Why Some People Stay Symptom-Free Despite Disease Genes
Why do some people inherit disease-causing genes but show no symptoms?


Jan 203 min read
Breakthrough Discovery Uncovers a New Genetic Link to Autism Spectrum Disorder
A groundbreaking study has linked the DDX53 gene, located on the X chromosome, to autism spectrum disorder (ASD).
Living Rare Editorials


13 hours ago5 min read
Love Beyond Romance: Guide to Embracing Self-Care and Connection on Valentine’s Day
For many, Valentine’s Day is all about romantic gestures—but for those with rare diseases, it’s a powerful reminder to celebrate self-love f


Jan 112 min read
Winter Wellness Guide: Herbal Remedies to Support Rare Disease Patients During the Colder Months
Discover natural herbal remedies to boost immunity and manage symptoms during winter for rare disease patients.


Dec 10, 20246 min read
Breaking Barriers: Addressing Economic Inequities Faced by Black and Brown Women with Disabilities
Systemic barriers rooted in race, gender, and disability result in significant economic and social inequities for disabled women of color.
Patient Advocacy & Community Activism


Feb 74 min read
Navigating Hypercortisolism: A Guide to Understanding Cushing’s Syndrome
Cushing’s Syndrome is a rare but serious endocrine disorder caused by prolonged exposure to high levels of cortisol.


Feb 59 min read
When Low Blood Sugar Strikes: A Deep Dive into Idiopathic Ketotic Hypoglycemia
Idiopathic Ketotic Hypoglycemia (IKH) is a rare metabolic disorder often overlooked in children.


Jan 234 min read
Respecting Boundaries: Why it's important for the Pharmaceutical Industry and Its Service Providers to Ethically Engage with Online Rare Disease Communities
Pharma companies must respect the privacy of rare disease communities on social media.
Thought Leaders

Jan 275 min read
Redefining Market Research with Empathy and Inclusion: Insights from Heather Flaherty
Heather F., co-founder of Level 5 Insights, is redefining healthcare market research with a mission rooted in empathy, inclusion, & advocacy


Jan 225 min read
Repairing Trust and Supporting Community-based Advocacy: A Conversation with Rare360's Executive Director
Explore how Rare360 empowers the rare disease community through advocacy and trust-building.


Dec 18, 20245 min read
Championing Change: Brittany Galante on Bridging Gaps in Rare Disease Healthcare
From personal experience to professional impact, Brittany Galante is transforming rare disease diagnostics for the hEDS community and beyond
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