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.”
According to the Union for International Cancer Control (UICC), 8.2 million people die from cancer worldwide each year. And that number is set to rise. To address the cancer epidemic, the UICC organizes World Cancer Day on February 4 of each year. The day was created “to raise awareness about the disease and to develop practical strategies to address the cancer burden.”
The 2015 World Cancer Day tagline is “Not Beyond Us,” which is intended to highlight that solutions to cancer care are within reach. Four key areas of focus support this theme. For each of the four areas, UICC defines targets to achieve by the year 2025 and the challenge to achieving these targets. UICC also describes how we can overcome the challenge to meeting their targets for each focus area. Learn more about each of the focus areas here:
Click to view U.S map illustrating cancer incidence and locations of enrolling cancer clinical trials.
Joseph Kim serves as a Senior Advisor in Clinical Development Innovation at Lilly, focusing on developing and implementing innovative patient engagement solutions. He has spent over 15 years in the Pharma industry utilizing a unique approach that integrates his experiences working for Sponsors such as Shire and Merck, CROs, and technology vendors.
Joseph has a robust combination of experience that includes early and late phase clinical research, and a well known history of innovation in the clinical research industry, recognized as one of “20 Innovators Changing the Face of the Clinical Trials Industry” by CenterWatch in 2013. He holds a BS in Molecular Biology from Lehigh University and an MBA from Villanova. He can be reached at firstname.lastname@example.org and on Twitter.
Tell us a little bit about yourself and how you got started in clinical research.
For starters, you should know that I did not come to clinical research through any natural career path. In fact, I had two other careers as a social worker and high school science teacher before landing in clinical research. My first role was as an entry level data manager. Quite comfortable with trying things on and pivoting quickly, my instinct was, “This isn’t for me either.” Given that I worked for a large pharma company (Merck), I was able to quickly learn about other roles and try them on too. My next move was as a garden variety study manager in psychiatric research. This was the old model, where it was you and a medical monitor doing everything from writing the protocol, to selecting sites, to reviewing data, to paying grants.
We’re privileged to be working with Rahlyn Gossen, founder of Rebar Interactive, a digital strategy consultancy serving the clinical research industry. Rebar Interactive creates empowering (and award-winning) digital experiences for patients and professionals. Rahlyn’s digital marketing expertise spans a variety of areas, including search, social media, and mobile. Her work is infused with a patient-centric perspective, honed during Rahlyn’s time as a clinical research coordinator.
Rahlyn publishes a widely-read clinical trial blog and newsletter focusing on digital strategy, the patient experience, and innovation. The same topics are explored in 140 characters or less on Rebar Interactive’s Twitter account. Rahlyn also serves on the editorial advisory board of Applied Clinical Trials. Rahlyn is a proud New Orleanian and a connoisseur of cute online animal videos, particularly those of the feline variety.
Tell me a little bit about yourself, and the path you’ve been on to make clinical research better.