Tag Archives: patients

More Than 90 Patient Organizations Urge Congress to Protect Patients and Innovation

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Today, the Epilepsy Foundation and a diverse group of more than 90 advocacy organizations submitted a letter to the House and Senate Judiciary Committees urging Congress to maintain a strong and secure patent system that encourages investments in innovative treatments and devices as it considers comprehensive patent reform. Together, our organizations represent millions of individuals waiting for the next breakthrough treatment, and hopefully, cure. Without strong patents, many innovative ideas will not make it from the Read More >

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BIO Principles on Expanded Access to Investigational, Unapproved Medicines

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Seriously ill patients with limited or no alternative therapies, and who are ineligible or unable to participate in the clinical trials, may desire access to investigational, unapproved medicines.  Such access outside of the clinical trial setting, or “expanded access,” may be sought through a company’s expanded access program, or through individual patient expanded access, if available. We believe that the best way to make innovative biotechnology medicines available to patients is through the efficient development of approved, safe Read More >

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Coalition Offers a Remedy for Stagnated Clinical Trials

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Promising new clinical trial data offers fresh hope for the families of Alzheimer’s patients.  A new medication seems to be slowing the disease’s progress, limiting the cognitive decline that characterizes this “long goodbye.” Wouldn’t it be wonderful for patients suffering other diseases to have equally encouraging prospects? But many do not. Part of the problem lies with clinical trials.  For a new medication to receive FDA approval, it must undergo comprehensive testing on actual patients.  Read More >

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The Value of Innovation to Save and Transform Lives

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Patients have greater hope for cures to today’s most complex and challenging diseases thanks to modern specialty medicines, which allow doctors and patients to focus on prevention and avoid hospital care altogether. With the potential to save countless lives and improve so many more, today’s innovative life-enhancing medicines and therapies provide economic value far beyond their cost. The debate surrounding the value of modern specialty medicines focuses narrowly on one aspect – cost – while Read More >

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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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