From Our Affiliates
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Global Genes Partners with Genetic Disorders UK to Empower Individuals and Families affected by Rare Genetic Disorders Globally

There is great flux in all aspects of the lives of…

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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
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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
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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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Legislation Introduced in House to Provide Incentives for Rare Disease Drug Development
On Nov. 20, 2014, Rep. Gus Bilirakis (R-FL) introduced the “Orphan Product Extensions Now Accelerating Cures and Treatments Act of 2014”… Continue Reading
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PKU Life: The Plight of the Advocate
It’s hard to believe the holiday season is already upon us. For some people, it’s a very difficult time of year, but for others it’s… Continue Reading

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