Tag Archives: rare diseases

New Rare Disease Miniseries

roulette

Calling all biopharma researchers! Morning show “The Balancing Act” is producing a miniseries called “Roulette Wheel of Rare and Genetic Diseases,” and they are looking for pharmaceutical partners to help educate their audience. The series is working with the Global Genes Project to help educate patients and their families about new research, clinical trials, and government policies that affect those with a rare disease. Patient groups are already excited about this opportunity to spread awareness- take Read More >

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FDA Safety and Innovation Act: A Step Forward for Patients With Rare Diseases

Peter L. Saltonstall

By Peter L. Saltonstall, President and CEO, National Organization for Rare Disorders (NORD) The Food and Drug Administration Safety and Innovation Act (FDASIA) includes the most groundbreaking measures for rare disease patients and their families since the Orphan Drug Act of 1983.  And, just as the rare disease patient community—with NORD as its unifying voice—played a major role in the Orphan Drug Act, NORD and rare disease patients have taken a leadership role in developing Read More >

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People With Rare Diseases Face a Host of Unique Challenges

Dennis Jackman

By Dennis Jackman, Senior Vice President, Public Affairs, CSL Behring People with rare and serious medical disorders encounter a host of unique challenges–from obtaining a correct diagnosis, to identifying an appropriate course of treatment and gaining affordable access to the care they need.  They and their families, caretakers and health care providers face a constant struggle to identify and access available resources, away from the attention of traditional media that focuses on more common disorders Read More >

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2012 Orphan Disease Forum: Addressing Today’s Opportunities and Challenges

disease

If all of the people with rare disease lived in one country, it would be the world’s third most populous country! Through dedicated companies such as the National Organization for Rare Disorders (NORD) and Centric Health Resources, the pressing issue of orphan diseases and its patients are being addressed. A rare disease is defined by any disease affecting fewer than 200,000 Americans. There are nearly 7,000 such diseases affecting over 350 million people worldwide.  Furthermore, Read More >

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International Rare Disease Day: Join the Movement

Nicole Boice

By Nicole Boice, President and Founder, RARE Project Being diagnosed with any illness can be overwhelming. Imagine what it’s like, though, to be diagnosed with a disease that you’ve never heard of – maybe even one that your doctor has never seen before. Millions of people start this diagnostic odyssey on their own, with little or no support, no real direction, with feelings of isolation and fear. That’s exactly the situation in which millions of Read More >

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