The following story was submitted by Jenny Malec in honor of June’s Rare Spotlight, Appendix Cancer and Pseudomyxoma Peritonei (ACPMP). In this story, Jenny reflects… Read More
Real-world evidence and compelling case studies bring to life the challenges facing the estimated 30 million Americans fighting to live better with rare disorders
Washington, DC, June 3, 2019—
The following story was submitted by Arthur Gause in honor of May’s Rare Spotlight, Chronic Inflammatory Demyelinating Polyneuropathy (CIDP). In this story, Arthur reflects on his diagnostic journey and… Read More
This year’s Rare Impact Awards are going to be spectacular! From star power to the heroes of the rare disease community, it is going to be a night to remember. Every registration to theRead More
Houston native Deborah Skolaski is the loving grandmother of Cori, a seven year-old living with metachromatic leukodystrophy. MLD is a genetic disorder that affects the nerves, muscles and other organs, as well… Read More
