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June 29, 2015

TOPIC: Uncategorized

Member Spotlight: AMEN Support

Posted by Lisa Sencen

The American Multiple Endocrine Neoplasia Support (AMEN Support) is a voluntary organization whose mission is to provide education and support to patients, their families and medical personnel regarding multiple endocrine neoplasia (MEN) type 1, MEN type 2a, MEN type 2b. To learn about MEN and  AMEN Support, visit their website


Linda Hageman, co-founder of AMENSupport and Glen Gray, their… Read More

June 26, 2015

TOPIC: Uncategorized

People Magazine Turns Spotlight on Rare Diseases with Personal Stories from Country Music Star Randy Rogers and Model Lauren Wasser

Posted by Lisa Sencen

Rare diseases earned some time in the national spotlight this week, thanks to two new articles that People magazine posted on its website.

Randy Rogers band tweet

Randy Rogers, lead-act in the Randy Rogers Band, lost his 6-day-old baby girl, Rumer, to Nonketotic Hyperglycinemia (NKH), a rare disease that is characterized by the accumulation of… Read More

June 22, 2015


Member Spotlight: UMDF

Posted by Lisa Sencen


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 Lisa Sencen

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