Approximately 80 percent of the close to 7,000 rare diseases are caused by genetic changes. Although many people may value their privacy and consider their rare disease nobody’s business but their own, there are many reasons why patients or parents of children with a rare disease might choose to share that information with others, including medical professionals, family members, children, and teachers.
This is the premise of one of the mini toolkits, How to Discuss Genetic Disease with Your Loved Ones, launching today. As many of you are familiar with, Global Genes has created a library of RARE Toolkits to provide critical information on topics related to living with rare disease and advocating for loved ones with a 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 toolkits are based on Global Gene’s popular April and June webinars, How to Discuss Genetic Disease with Your Loved Ones and Leveraging a Rare Disease Center of Excellence. These toolkits (all available online here) use the discussions during the webinars as a starting off point for further dialogue. Explore these new additions today online!