Today, 28 February, is World Rare Disease Day.
The aim of this commemoration is to make visible the reality experienced by many people in the world who suffer from pathologies that affect a small percentage of people and which, in many cases, are very serious. However, given that their number is very high, it is estimated that in Spain alone up to three million people are affected by a rare disease (according to data from the Spanish Federation of Rare Diseases).
There are many groups working to help these people. Today we wanted to highlight one of them: the PHEiPAS association, which brings together patients and families with paraganglioma, pheochromocytoma and adrenocortical carcinomas, which are rare neuroendocrine tumours of the adrenal gland.
You can learn more about them on their website or you can watch the video of the V Symposium of patients with these pathologies held at the Hospital La Fe in Valencia on 14 February 2025. The event featured five presentations by specialists in the field and a table of patients who recounted their experiences with the disease. You can watch the video here.