There are currently more than 7,000 rare diseases identified worldwide, affecting about 350 million people globally. Approximately 80 percent of these are caused by genetic changes. Although many people value their privacy, there are a number of reasons why patients or parents of children with a rare disease might choose to share their diagnosis with others, including medical professionals, family members, children, and teachers.
Global Genes, an advocacy organization that seeks to eliminate the challenges of rare disease, has created a library of RARE Toolkits to provide critical information on topics related to living with rare disease and advocating for rare disease patients—including how to share information on rare disease.
These toolkits, created in collaboration with key rare-disease experts, are comprehensive, interactive educational resources that will continue to evolve as advocates share additional best practices around specific topics. The most recently published toolkit is based on Global Genes’ webinar How to discuss genetic disease with your loved ones. This toolkit provides basics on genetic disease, how and when patients might want to discuss details of their disease with others, and who might benefit from such a conversation.
Additional RARE Toolkit topics include:
These resources are available online, as downloadable PDFs, and in print. If you don’t see a topic that you need or if you are interested in collaborating around a specific topic, please share your ideas with Global Genes.