By attending advocacy events, we learned that people affected by rare diseases are passionate about making a difference in their communities. In reality, they are not often given the opportunity to communicate their experiences with the companies that create the medical devices and medications they use on a daily basis. For over 20 years, we have supported the efforts of medical product manufacturers to ensure safer, more user-friendly products and services for patients and caregivers with chronic conditions. The best way to understand the needs of real-world users is to provide a place where their voice can be heard during this critical phase of product development.
Creating opportunities for patient voices to be heard is especially "important because 1 in 20 people will live with a rare disease at some point in their life"(a). We are extremely grateful for every participant that has shared their experiences with us as we strive to fit products to people.
If you are interested in sharing your story and participating in upcoming projects, please contact our office at 215-627-4122. Be sure to check out our website and find out what we've been working on for these very special days.
a. “What Is Rare Disease Day?” Rare Disease Day, www.rarediseaseday.org/article/what-is-rare-disease-day.
