Unusual. Uncommon. Infrequent. What else comes to mind when you hear the word, “rare?” It’s used so often that we can easily forget the significance of something that is scarce or atypical. Today, February 28, 2019, is Rare Disease Day. Although the day itself is infrequent, more people manage rare diseases than you might think. From Hemophilia A and B, Juvenile Idiopathic Arthritis, and Acute Myeloid Leukemia, to Idiopathic Pulmonary Fibrosis, the list of rare diseases is long; it impacts 1 in 20 people; and for most, there is no cure.
As a partner to those managing rare diseases, the word “rare” means something else to us at Design Science as well. We’re interested in the people–not just the diseases. These people are exceptional, unique, remarkable and outstanding! Our passion is to provide a place where those managing rare diseases can influence the future of healthcare technology. Our simulated use studies provide an opportunity for patients, family members, and healthcare professionals to share their unique experiences in impactful ways.
Rare diseases exist all around us, even if they are not always obvious. If you or are a loved one lives with such a condition, we want to hear from you! To learn more about how to share your story and provide feedback, please call our office at 215-627-4122. You may not have asked for your diagnosis, but you can make a difference in the future of treatment.
For additional information about Rare Disease Day, please visit rarediseaseday.org.