From Our Affiliates
Meet Cass.
The Employment Plan – Where Do You Start?

by Joan Friedlander Meet Cass. Cass is one in a…

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Catching Up with the Rare Daily: Genetic Disorders UK, Pediatric Palliative Care & Congres
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Lance To Chair Congressional Rare Disease Caucus
Congressman Leonard Lance (NJ-07) today announced he will continue as the Republican Chair of the Congressional Rare Disease Caucus in the… Continue Reading
Harper’s Battle against KCNQ2 EOEE
In May 2011 Harper was born and seemed to be in perfect health, although she was unusually quiet. When Harper was two days old, we noticed… Continue Reading
Patient Support Webinar for Idiopathic Pulmonary Fibrosis Community
The last few weeks have been such an exciting time for the idiopathic pulmonary fibrosis community. To inform you about a treatment option… Continue Reading
Hayden and Sarah Noble Journey with Mucolipidosis III
Hayden and Sarah’s story beings the day Hayden was diagnosed with Mucolipidosis III in 1987 and a few short months later Sarah was… Continue Reading
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Infantile Onset Krabbe’s Disease: How His Brother Saved His Life
Our first born son, Stephen Alexander Mendoza, was born on September 8, 2009. He was born perfectly healthy and too cute for words! Our new… Continue Reading
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Rare on the Red Carpet: Colin Farrell Supports Patients with Angelman
Colin Farrell is an Irish actor best known for his swarthy good looks and bad-boy reputation–but what most people don’t know?… Continue Reading

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