2.3.2012 My son, Noah, now 15 years old, first started having health problems as an infant. First, he had asthma, then chronic pneumonia, and as he… Continue Reading
11.14.2010 The WHOLE WIDE WORLD should know there is a girl in central Florida with a beautiful smile, and an even more beautiful soul whose name is… Continue Reading
6.29.2010 On Tuesday, June 29, 2010, and Wednesday, June 30, 2010, FDA’s Office of Orphan Products Development will host a two-day public hearing… Continue Reading
5.11.2010 Standing shoulder to shoulder with hundreds of other parents this past Monday on what turned out to be an absolutely sticky afternoon, I… Continue Reading
Make Rare Disease a Top USA Health Care Priority, Vote Today at Change.org – 25 Million+, It is time to care about rare disease.
2.1.2010 For the millions and millions of kids and adults, brothers and sisters, moms and dads, families of every sort, friends, doctors,… Continue Reading
11.14.2009 Uniting Rare Diseases, Advancing Rare Disease Research: The Intersection of Patient Registries, Biospecimen Repositories and Clinical Data.… Continue Reading
7.13.2009 In this first in a series of podcasts focused on rare disease patient advocates, we speak to Debra Miller, president and founder of Cure… Continue Reading