Tag Archives: Patient community

Mito What???

Liz-Kennerly-115x76

Mitochondrial Disease: The Most Common Disease You’ve Probably Never Heard of… About 20 years ago, mitochondrial disease was virtually unheard of.  Just 10 years ago, it was considered rare. Today, according to NORD, a disease is considered rare when less than 200,000 people are affected.  Mitochondrial disease is not a single disease, but rather an entire umbrella of rare diseases.  For example, Alpers disease and Barth syndrome are very different and rare forms of mitochondrial Read More >

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Rare Disease Day 2014: Joining Together for Better Care

Hans Schikan of Prosensa

There are more than 6,000 different rare diseases affecting over 60 million people across Europe and North America, alone, and millions more throughout the world. Most of these diseases are genetic, serious, chronic and debilitating. Each disease is different, but they affect people in similar ways. Joining together can help patients and their families find common solutions for care and remind them they are not alone. As the world marks Rare Disease Day on February Read More >

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BIO Patient and Health Advocacy Summit: Patient-Focused Drug Development

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Panelists in this morning’s opening session outlined strategies for the FDA to better engage the patient community to guide the drug development process. “Patients should be providing input and guidance throughout the entire drug review process,” said Marc Boutin, Executive VP and COO of the National Health Council. Boutin highlighted the improvements made through PDUFA V to open up and enhance the Agency’s interaction and engagement with patients. “Integrating our perspective into how drugs are Read More >

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