There is a growing recognition that the world of rare disease is different and comes with unique challenges, but 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…
In recent years, there has been a push towards expanding the role of patients, advocates, and caregivers (also referred to as patient and public involvement in medical literature; “patient” includes advocates and caregivers in this context) in medical research and publications on ethical, normative, and substantive grounds.
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.
Peer-reviewed medical publications remain a mainstay of trusted communication of disease and treatment information. They influence everything from prescribing options to treatment guidelines and payer decisions. They are even more essential in rare diseases as PACs seek to educate themselves and often their physicians.