Author Raymond A. Huml on FSHD

FSHD: Keeping the Patient Voice at the Center of ProgressFacioscapulohumeral muscular dystrophy, or FSHD, is often…

June is MG Awareness Month

As part of PatientSight's "The Patient Experience Benchmark Report", 102 people in the US living with generalized myasthenia gravis (gMG) were…

Friedreich's Ataxia Awareness Month

Open-ended survey response summary from people living with or caring for someone with FA (n=18). Friedreich's Ataxia (FA) is a rare…

May is ALS Awareness Month

In recognition of ALS Awareness Month, I am sharing some research findings. As part of PatientSight's Rare Disease Patient Tracker, we asked 20…

Cell & Gene Therapy

Cell and gene therapy (C/GT) has moved from scientific promise to clinical reality in a growing number of diseases, particularly in rare and…

World Hemophilia Day 2026

In recognition of World Hemophilia Day (April 17th), PatientSight is sharing findings from open-ended survey responses that shed light on the…

Rare Disease Study

No two rare disease journeys are the same, but there are many shared experiences that are revealed in this large 2025 study of nearly 400 patients…

Patient Co-Design in Clinical Trials

Defining co-design: beyond the feedback formOne of the most persistent misconceptions discussed was the difference between…

PatientSight Podcast

PatientSight President Dave Muggler speaks to Priscilla McKinney about the importance of rare disease patient research and solutions to some of…

AI-Enabled Patient Persona Videos

It seems like you can’t scroll through news feeds without videos popping up. YouTube and TikTok remain widely popular social media platforms. Why?…