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Insights

A total of 936 posts are filed under Insights
Laying the Ground Rules: Crafting Guidelines for Rare Disease Patient Organizations
Patient organizations and drug companies have a symbiotic relationship. Both want to see new therapies reach the market and by… Continue Reading
Rare Disease Trailblazers’ Lawsuit Offers Lessons for Others 
Shortly after I first began my involvement in the rare disease community, I was taken by the story of Chris and Hugh Hempel, the parents of… Continue Reading
Video: What Should I Say?
What should you say when you see someone with disabilities? Bo Bigelow says that it’s like how you should treat someone who’s pregnant.… Continue Reading
Thoughts on the Year that Was and What Will Be
The year 2017 was one that inspired hopes in rare disease patients with the advance of innovative technologies in the pipeline that promise… Continue Reading
Why Rare Disease Groups Should Do More to Address Psychosocial Issues
A new study from researchers at Oregon State University finds people with rare conditions are a greater risk for health-related quality of… Continue Reading
Funding a But-For-Us Project
Dan Brendtro calls it a “but-for-us” project. Brendtro, an attorney in Sioux Falls, South Dakota is in the midst of a crowdfunding… Continue Reading
Lost in Translation
If you want to understand the value of patient-centered outcome measures, consider people with the rare progressive muscle disease Duchenne… Continue Reading
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