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Rare Community

A total of 645 posts are filed under Rare Community
Video: Love Letters Series I Brick in the Wall
Brick in the Wall follows the life and legacy of Joshua Frase, and his family’s journey of finding a cure for his rare disorder,… Continue Reading
The Education of a Young Doctor
After completing a master’s degree in neuroscience, Jessie Kulaga-Yoskovitz needed to find a job before she began medical school. A friend… Continue Reading
Rare Leader: Michael L. Weamer, President and CEO of The Marfan Foundation
The Basics Name: Michael L. Weamer Title: President & CEO Organization: The Marfan Foundation Disease focus:  Marfan syndrome and related… Continue Reading
A Rare Cancer in Need of Congressional Recognition
Sarcoma has long been under-represented in the research landscape, in part because it represents just 1 percent of all cancers. There are… Continue Reading
Rare Leader: Anne Bruns, Sponsor Chair of Utah Rare
The Basics Name: Anne Bruns Title: Sponsor Chair Organization: Utah Rare Disease focus: Coalition for rare disease organizations and… Continue Reading
Kevan Chandler is Going Far
Kevan Chandler long dreamed of travelling. The problem was that many of the places he wanted to go weren’t wheelchair accessible. The… Continue Reading
Rare Leader: Melissa Hogan: Founder and President of Project Alive
The Basics Name: Melissa Hogan Title: Founder and President Organization: Project Alive  Disease focus: Hunter Syndrome, or… Continue Reading