Suffering from the symptoms of Acute Intermittent Porphyria for years and not knowing it, was a really difficult time in my life. This is also the case for every single member of our Facebook community. The ‘AIP - Acute Intermittent Porphyria Support (Rare Blood Disorder)’ is a virtual community that offers support to individuals with AIP or to those who believe they may have it but haven’t been tested. The most prevalent issue in our community is the lack of knowledge on AIP among health care professionals, causing individuals to go undiagnosed and in many cases misdiagnosed, leading to further complications. Porphyria is extremely rare with most doctors not having an education on the condition, so when an individual presents their symptoms to a doctor, porphyria is rarely tested. Moreover, if an individual has been diagnosed with Porphyria and is admitted to hospital or visits a different general practitioner than usual, the right care is seldom administered with the individual having to explain and in some cases plead for what they need.