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 patients, advocates, caregivers, healthcare professionals, treatment industry leaders, and beyond. We share our thinking with the community here and via email. To be added to our email list and get future resources directly in your inbox, please get in touch.
In rare diseases, patients, advocates, and caregivers (PAC) are playing a more prominent role as well-informed stakeholders and experts in their own right who actively participate in, or even direct, health care decision-making. However, it can be challenging for PACs to find easy-to-understand, trustworthy information about complex rare diseases. The plain language summary (PLS) is an effective tool to share knowledge with PACs and enable them to become better advocates for themselves and others.
More and more often, biopharmaceutical companies around the world are proactively preparing PLSs as educational tools when clinical trials are developed and investigators kick off trial enrollment efforts.
Our most recent rareIQ highlights the regulatory requirements, pharmaceutical industry regulatory concerns and solutions, who in an organization should develop a PLS, and other key considerations in PLS development.