A disease or disorder is defined as rare in Europe when it affects fewer than 1 in 2000.
A disease or disorder is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time. ... In the EU, as many as 30 million people may be affected by one of over 6000 existing rare diseases.
Porphyria is just one of those ultra rare diseases in the form of Acute Hepatic Porphyria or Cutaneous type of Porphyria.
If you or a loved one suffers from this debilitating disease and need help please contact the American Porphyria Foundation @ 1.866.APF.3635 and you can learn form Experts Physicians from around the world.