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 here and via email. To be added to our email list and get future resources directly in your inbox, please get in touch.
Although we all instinctively understand “individual privacy,” it is not very well defined and can mean different things based on age, cultural background, education, etc. There is an essential need to obtain and exchange critical information on rare diseases to be able to better treat and manage rare diseases among patients. Therefore, it is natural in the digital age for patients, advocates, and caregivers (PACs) to establish and build their own disease-specific online communities. It is incumbent on the owners and managers of online communities to ensure individual privacy – This is even more challenging for online communities for rare diseases because there are so few patients.
In the following video, author Mukund Nori shares highlights from his research findings: