Roadmap Rare diagnosis

After the journey to find an answer, receiving a rare diagnosis can be a time of mixed feelings and more questions. Although information and support specific to the diagnosis is often limited, general resources can help with many aspects of daily life as well as next steps beyond the search. 

Tracking down resources can be time consuming, and many people find it difficult to know how and where to start searching. The roadmap provides a small number of direct, high-quality links as a starting point.