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The Lilly Clinical Open Innovation (LCOI) blog, like much of the work we do in innovation, started as a thoughtful experiment. We believed that a blog would provide a great opportunity to openly explore clinical innovation topics and drive discussions around improving the patient experience. So in March of 2012, we launched the LCOI blog with the publication of our first post.
What was initially an experiment has turned into a wonderful and rewarding success! Since that first blog post over three years ago, we’ve published over 210 additional posts, while continuing to learn and evolve along the way. We’ve had many fantastic discussions with you, our audience, about how to improve the clinical trial experience for patients, meanwhile speeding innovation and scientific discovery. And we’re just getting started.
Hello, dear blog followers! Given your wonderful support of Lilly Clinical Open Innovation (LCOI), we wanted you to be the first to know that our blog is moving. More details about our move will be shared in a forthcoming blog post, but in the meantime, we’d like to share some highlights with you.
Next week the LCOI blog will be moved over to LillyPad, Lilly’s corporate blog. You will be able to find all of our posts, past and future, in LillyPad’s new Clinical Innovation section. Our Twitter handle will remain the same. As a blog subscriber, you should also know that you will no longer have the ability to subscribe to blogs via email, though we are looking to add that capability. To make sure that you are notified as new posts are published, we recommend that you subscribe to our RSS feed.
Thank you so much for the support you have shown LCOI. We look forward to expanding the conversation with you as we move to a new platform and begin this new chapter. See you next week at our new home!
In the early 90s, Britt Johnson‘s life was like that of any healthy young girl. Until suddenly, it wasn’t. In the summer of 1992, Britt came down with strep throat for the first of what would be many times. Over the next several months, Britt encountered one health setback after another. Months of health setbacks turned into years, during which time Britt had repeated contact with the healthcare system. This contact was not always positive. Britt received a series of misdiagnoses and was even accused of being a hypochondriac. Finally, at the age of 20 Britt was diagnosed with Psoriatic Arthritis. Britt’s disease has continued to progress, and her diagnosis has been amended to Spondyloarthropathy and Rheumatoid Arthritis.
Our most rare or unique qualities can often be our greatest strengths, but when it comes to disease, rarity is a tremendous challenge. A rare disease, also known as an orphan disease, is any disease that affects a small percentage of people. In the United States, a disease is considered rare if it affects fewer than 200,000 people at any given time. According to the National Institutes of Health (NIH), there are more than 6,800 rare diseases. Though each of these diseases are rare, having a rare disease of some sort is not. Approximately 30 million Americans, or almost one in every 10 people, suffer from a rare disease.
Living With a Rare Disease
The numbers cited above are interesting, but they don’t tell the whole story. The rest of the story relates to the daily struggles of rare disease patients and their support networks. Rare disease symptoms vary even among patients suffering from the same disease. This symptom variability, combined with lack of scientific understanding and awareness, can lead to delayed diagnosis and difficulty accessing treatment. Patient quality of life is severely affected by the “loss of autonomy due to the chronic, progressive, degenerative, and frequently life-threatening aspects of the disease.”