As a NORD IAMRARE™ Registry Partner, the IPPF is proud to share that a new book, The Power of Patients: Informing Our Understanding of Rare Diseases was published today by the National Organization for Rare Disorders, Inc. (NORD) and Trio Health. The book features natural history data collected from the IPPF, a member of NORD’s IAMRARE registry community.
The Natural History Study is an online data system that collects, stores, and retrieves patient data for analysis in research studies. It is designed to help the medical and research community understand illness trends, treatment outcomes, disease burden, and some important demographic information about patient age and gender.
By sharing stories, celebrating community-driven teamwork, and exhibiting data from the registry community, The Power of Patients illustrates the promise and potential of natural history studies and highlights the vital importance of patient participation.
“At NORD, our priority is to create real change and accelerate progress for the rare disease community. By working at the intersection of research, policy, and education, we demonstrate the power and possibility of patient-reported, real-world evidence,” said Peter L. Saltonstall, President and CEO of NORD. “Created in collaboration with Trio Health, The Power of Patients amplifies the experiences of individuals and families living with rare diseases, and demonstrates the importance of registries and natural history data in helping to shape the way the rare disease landscape is navigated by patients and their physicians.”
Continue reading the full press release to learn more about the new book and the stories and data collected.