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. I you’d like to be added to our email list and get future rareIQ issues directly in your inbox, please get in touch.
COVID-19 has brought with it a new reality that directly impacts the methods we use to communicate and disseminate information to patients, advocates, caregivers (PAC), and physicians alike. Our world has changed, and our approaches need to adjust. However, the critical need of communicating information to all of our stakeholders remains.
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.
