Genetic Data for Sale? The Ethical Dilemma of 23andMe’s Financial Struggles
Once a trailblazer in genetic testing, 23andMe now faces financial uncertainty, sparking concerns about the future of its genetic database.
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News Briefs
Oct 295 min read
A Major Milestone for Disability Rights: DOT’s Historic Fine on American Airlines
The U.S. DOT recent $50 million fine against American Airlines marks a pivotal moment in the fight for disability rights in air travel.
Oct 256 min read
The Overlooked Crisis: How Rare Eye Disease Patients Are Left in the Dark
Millions of adults on Medicaid lack essential coverage for routine eye care, creating a silent crisis for those with rare diseases.
Living Rare Editorials
4 hours ago4 min read
Your Insights Matter: The Role of Market Research in Rare Disease
Market research studies play a transformative role in rare disease care by gathering insights directly from patients and caregivers.
Nov 118 min read
Navigating Love: Dating & Healthy Relationships for People with Disabilities
Here’s a guide to help cultivate fulfilling relationships that embrace each person’s unique experiences, including those with a disability.
Nov 16 min read
Bridging Technology and Empathy: How Compassionate AI is Transforming Rare Disease Healthcare
Compassionate AI is set to transform rare disease healthcare by combining the power of artificial intelligence with emotional intelligence.
Patient Advocacy & Community Activism
Nov 159 min read
Battling Fatigue? Discover Why Dry Eyes Could Be the Unseen Culprit
Feeling tired all the time? Discover the surprising connection between dry eyes and fatigue.
Nov 810 min read
Understanding Complement 3 Glomerulopathy (C3G): Unmasking the Complexities of a Rare Kidney Disease
Explore Complement 3 Glomerulopathy (C3G), a rare kidney disease that disrupts immune function and affects kidney health.
Oct 289 min read
Valerian Root: Ancient Sleep Aid, Modern Solutions
Learn how Valerian root, an ancient herbal remedy, may help rare disease patients tackle sleep disorders and improve their quality of life.
Thought Leaders
May 77 min read
Thought Leadership in Mental Health For Rare Diseases
A discussion with Mental Health for Rare Thought Leader JC Muyl.
Jan 234 min read
A Discussion with Michael Kornhauser - A Rare Disease Ally in Clinical Research
Discussing the impact of clinical studies on patients’ lives and Michael’s perspective as a clinical trials operations specialist.
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