Subscribe to
this category

In Rare Form

A total of 16 posts are filed under In Rare Form
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
Paying It Forward
The average wedding in the United States cost $35,329 in 2016, according to the wedding planning website The Knot. Tiffany Au and Caleb… Continue Reading
A Different Kind of Buddy Film
Kyle Goes to Prom is an unfinished film that documents a group of college buddies at Texas A&M who surprise their friend Kyle Cox with a… 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