While there is a growing recognition that the world of rare disease is different and comes with unique challenges, the body of knowledge around how to address those challenges is very much a work in progress. At rareLife solutions, we’re helping to build that knowledge base by sharing what we’ve learned from our work with patients, advocates, caregivers, healthcare professionals, treatment industry leaders, and beyond. We share our thinking with the community through an occasional series of articles we call rareIQ. To be added to our email list and get future rareIQ issues directly in your inbox, please get in touch.
Finding and diagnosing patients early in the journey benefits the entire rare disease community. While artificial intelligence and big data are growing as ways to potentially find patients sooner, sometimes — especially in rare — a more personal approach is required.
Because we are immersed in rare diseases, both professionally and personally, our team understands the intricacies of rare. Patient finding and community building are cornerstones of rare disease problem solving as they directly benefit individuals living with a rare disease and the rare community at large, while enabling improvements in patients’ experience and care.