Highlights:

News Briefs

FDA Approves First-Ever Epinephrine Nasal Spray (Neffy) for Treating Life-Threatening Allergic Reactions

Neffy, the FDA-approved epinephrine nasal spray, offering a groundbreaking alternative to injections for managing severe allergic reactions.

Vision Services Disparity: How Medicaid’s State-Level Policies Affect the US Rare Disease Community

Learn why expanding Medicaid vision coverage is crucial for the rare disease community and what policy reforms could help.

Digital Health in Rare Diseases: How Wearables are Transforming PNH Care

Learn how wearable technology, like Fitbits, is helping patients with PNH track their overall well-being.

Medical Gaslighting and Rare Diseases: A Call for Awareness and Change

Learn about the impact of gaslighting on rare disease patients and strategies to navigate the healthcare system.

Ransomware and Rare Diseases: The Unseen Impact on Chronic Illness Patients

Explore the hidden dangers of ransomware attacks on healthcare, focusing on their impact on rare disease patients.

From Isolation to Empowerment: How Performing Arts Can Transform the Lives of Those with Rare Diseases

Discover how performing arts can uplift individuals with rare diseases, addressing mental health challenges and fostering empowerment.

Addressing AI Algorithmic Bias in Healthcare: A Focus on Rare Disease Patients

Artificial intelligence is transforming healthcare, but rare disease patients are facing new challenges due to algorithmic bias.

The Feeding Tube Community: Living with Strength, Solidarity, and Resilience

Explore how the feeding tube community is breaking barriers, raising awareness, and living life to the fullest.

Battling Batten Disease: A Fight Against the Rare and Relentless

Discover the complexities of Batten disease, a rare neurodegenerative disorder affecting children.

Thought Leadership in Mental Health For Rare Diseases

A discussion with Mental Health for Rare Thought Leader JC Muyl.

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.