To Top

June 22, 2015


Member Spotlight: UMDF

Posted by Christina Jensen


The UMDF Mission is to promote research and education for the diagnosis, treatment, and cure of mitochondrial disorders and to provide support to affected individuals and families.  To learn more about UMDF, please go to:

1.)   What does it mean to you personally to be a patient organization serving the rare community?

  1. Fulfilling a necessary need to a group that… Read More

June 19, 2015

TOPIC: Featured News

Q & A with Russ Illes, Author of Duct Tape Won’t Fix This

Posted by Jennifer Huron

What can’t duct tape fix?  Russ Illes, author of Duct Tape Won’t Fix This: A Father’s Perspective on Raising a Chronically Ill Child (Riverhaven Books) says men love to use it for everything, but when faced with a sick child, duct tape will not work.  “In fact there isn’t… Read More

June 18, 2015

TOPIC: Patient Stories

The Fight for a Cure for Duchenne

Posted by Christina Jensen

When Robert and Theresa Capolongo were preparing to be parents, many words were thrown around by their friends and family about the joys of having children. “Fulfilling.” “Life-changing.” “Beautiful.” These were, of course, balanced with considerate pieces of advice. “It’s the toughest job out there.” “It’s not about you anymore, it’s about them.” 

All of the above turned-out to be… Read More

June 17, 2015

TOPIC: Advocacy, Featured News, Press Releases, Research

Impact of the Orphan Drug Tax Credit on Treatments for Rare Diseases

Posted by Jennifer Huron


Today, the National Organization for Rare Disorders (NORD), Biotechnology Industry Organization (BIO), and Ernst & Young released “Impact of the Orphan Drug Tax Credit on Treatments for Rare Diseases,” a new white paper examining the role of the Orphan Drug Tax Credit (ODTC) on rare disease drug discovery.   Patients share their experiences in profiles that accompany this study.  Read… Read More