Tag Archives: patient advocates

Mito What???

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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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Industry-Disease Foundation Partnerships Thrive on Communication & Transparency

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Disease foundations are playing an increasingly important role in advancing research and helping to bring new treatments to market. Their unique expertise in specific disease areas, along with their keen understanding of patient needs and access to clinical thought leaders and patients, can enhance and accelerate the clinical development of new treatments. At a 2014 BIO International Convention Breakout Session, session moderator Gail Maderis, President and CEO of BayBio, opened with some key statistics about Read More >

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The International Myeloma Foundation Pioneers Myeloma Awareness Month

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Years ago, after much frustration over the lack of understanding and awareness of multiple myeloma, the International Myeloma Foundation (IMF) declared March as “Myeloma Awareness Month” and has grown its program into a multifaceted campaign. This year’s program included a kickoff live event, free teleconference, new website, social media, local proclamations, and “Myeloma Awareness Month” kits for the more than 150 IMF support groups across the country. At the start of the month, IMF launched 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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Involving Patients in the Research Process

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According to the National Psoriasis Foundation, as many as 7.5 million Americans live with psoriasis, making it the most common autoimmune disease in the country. More than just a skin condition, psoriasis puts people at increased risk for other serious diseases such as heart disease, diabetes and depression. Up to 30 percent of people with psoriasis develop psoriatic arthritis, an inflammatory joint disease. A complex disease with a genetic component, psoriasis is not contagious. While Read More >

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