In the span of two years, I lost two very important people in my life to rare diseases. My mother passed away after a long, courageous fight with a rare precancerous condition that eventually turned deadly. And one of my best friends, who was also godfather to my little girl, took his life to escape a painful rare nerve condition from which he couldn’t find treatment, relief or hope
In both cases, my mom and my friend consulted numerous physician specialists and received varying diagnoses, but in sum, the healthcare system let them down. Generally speaking, doctors have only so much time to devote to each patient’s particular case, and our healthcare system simply does not pay for researching each patient case to the degree you would want them to, as if your life depended on it.
So, my mother and friend were essentially left on their own (or really, we were left on our own) to research their diseases, and the latest science on treatment options. But this research proved extraordinarily difficult for non-physicians, like us.
Very early on, we understood that there was a lot more “out there” in terms of contemporary medical research, clinical trials and treatment options than we knew how to find. With 400,000 medical journal articles being published around the world each year, not to mention thousands of clinical trials and treatment innovations, we felt hopelessly overwhelmed by the amount of information. Additionally, even when we found articles or information we believed to be on-point, we were often at a loss to understand its relevance or meaning because it was often written for an audience of scientists and medical researchers, not lay persons like us.
And all the while, as we struggled with the most important and complicated research project of our lives, my loved ones were simultaneously coping with all the stress, logistical realities and anxiety of combating life-threatening illness.
Shortly after my friend’s passing, I resolved to fill this essential need for patients and loved ones facing the fight of their lives. Current, comprehensive, personalized information on the latest science and treatment options for people fighting rare diseases is vital to informing patients and saving lives. And ensuring that it is presented in a format that is understandable and usable by patients, their loved ones, and their doctors alike is fundamental if we are to bring the promise of medical research to the patient’s bedside in anything resembling real time.
To successfully beat life-threatening disease, patients need a team of partners around them. Responsum is here to play an important role on your team.
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