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Tag: rare disease and children

A total of 8 posts are filed under rare disease and children
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Gaucher Type 3 — Difficulty In Finding A Diagnosis For Rare Disease
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
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Emily’s Hope Against Vascular Ehlers-Danlos Syndrome: A Lesson For Us All
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
R.A.R.E. Project's, Jonathan Jacoby to present at FDA Hearing on Rare Disease
On Tuesday, June 29, 2010, and Wednesday, June 30, 2010, FDA’s Office of Orphan Products Development will host a two-day public… Continue Reading
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Letting Go . . . A Little Bit
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.
For the millions and millions of kids and adults, brothers and sisters, moms and dads, families of every sort, friends, doctors,… Continue Reading
Rare Disease Research Conference at NIH in Jan. 2010, registration is close to full, act fast.
Uniting Rare Diseases, Advancing Rare Disease Research: The Intersection of Patient Registries, Biospecimen Repositories and Clinical Data.… Continue Reading
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Searching for a Cure For Duchenne – Patient Perspective Podcast #1
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