Welcome to Living (Well) With Rare Disease!
Paradoxically, when Rare Disease patients are gathered together, we are actually not that Rare at all! An estimated 350 million people globally are diagnosed with one of the over 6000 known types of Rare Disease. (For a list of all types recognized in EU, see here: https://rarediseases.org/for-patients-and-families/information-resources/rare-disease-information/). So while each disease entity has its own unique symptoms, causes, treatments and such, the overall experience and challenges of living with a Rare Disease are similar. Those of us with Rare Disease have a whole lot of things in common!