PhRMA’s 2013 Alliance Advocacy Summit

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PhRMA’s 2013 Alliance Advocacy Summit “Redefining Advocacy: Advancing Ideas to Extend Lives and Put Patients First”   Tuesday, June 25, 2013 1 p.m. – 4:30 p.m. Networking Reception to Follow Ronald Reagan Building 1300 Pennsylvania Ave NW Washington, DC 20004  PhRMA is pleased to announce the first Alliance Advocacy Summit will be held on Tuesday, June 25 in Washington DC. … [more here...]

“The Promise In Unraveling The Mysteries Of Rare Diseases” on NPR

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Take a listen as NPR delves into the world of rare disease with this story. NEAL CONAN, HOST: This is TALK OF THE NATION. I'm Neal Conan in … [more here...]

Free Film Screening: The Life We Live

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The Spooner Family documentary, The Life We Live, will be premiering online on June 20th. Viewers can also view the film during a live screening … [more here...]

Vanishing White Matter Disease in Children, The Desperate Need for a Cure

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Imagine for a moment that a child you love, perhaps your son,daughter, granddaughter or niece, was unexpectedly diagnosed with one of those … [more here...]

When It Comes to Rare Disease, There’s Power in Numbers

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Global Genes | RARE Project speaks with one voice for thousands of rare diseases that are increasingly being identified with next-generation … [more here...]

Chronically Employed: From TV to Art, Ted Doesn’t Let Gaucher’s Disease Get in His Way

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Ted Meyer, 55, Los Angeles GG | RARE: What sort of job did you have before getting sick? Meyer: Right out of college I went into TV art … [more here...]

Huntington’s Chorea: Rare Genetic Disorder Brings Crippling Implications

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KARACHI: Sultana rues the day she formed a familial alliance with her husband. At that time, she had no way of knowing what it meant to be the wife … [more here...]