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Tag: Wall Street Journal

A total of 8 posts are filed under Wall Street Journal
How Lobbying for Rare Disease Research Influences Congress and NIH
By ED SILVERMAN For years, patient advocates and families have lobbied Congress for more funds to combat rare diseases. But to what extent… Continue Reading
“A Story Six Years in the Making” Wall Street Journal Produces Masterful Piece on the Hempel Family Saga
With graphics unlike you’ve ever seen before, the Wall Street Journal has created a multi-chapter journey for readers to explore the… Continue Reading
Wall Street Journal Goes In Depth On Tay-Sachs – Rare Disease Does Not Only Afflict Jewish, But Irish Community
Study Looks at Irish Risk for a Rare Fatal Disease By Amy Dockser Marcus The Wall Street Journal Online Tay-Sachs disease is generally known… Continue Reading
Change is Needed at the FDA Says Andrew Von Eschenbach
“Breakthrough technologies deserve a breakthrough in the way the FDA evaluates them.”  - Andrew Von Eschenbach Mr. Von… Continue Reading
Do It Yourself Drug Development, With Some Help! – Wall Street Journal Reports
The effort by two families to buy and develop a drug that holds promise in treating Duchenne muscular dystrophy — described today in the… Continue Reading
Do We Need a War on Rare Diseases?
By Amy Dockser Marcus, Wall Street Journal Is it time to declare a national “war on rare diseases” comparable to the famous “war on… Continue Reading
Increased Patient Participation in the Fight Against Rare Disease – IOM Report
The Institute of Medicine (IOM) issued a new report: “Rare Diseases and Orphan Products: Accelerating Research and Development” which… Continue Reading

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