Many scientists and doctors have been requesting international cooperation in the investigation of these tumors for a long time, but obviously scientists can not go on alone and they need the encouragement and support of patients seeking solutions and also political and social awareness of this need . As Amy Dockser Marcus (JCO June 1, 2009) said:
“In order to progress in the prognosis of rare tumors, patients should lead the way”
With this idea PHEiPAS was born, at the request of patients and with the support of their families and inspired by Dr. Isabel Tena, medical oncologist at the Provincial Hospital of Castellon.
Internationally there are several associations that have emerged to support these patients. Because of its importance we want to name the Pheo Para Troopers organization that emerged in the United States and provides coverage primarily for English-speaking patients. There is, however, no association that brings patients together globally and PHEiPAS intended to become one; but we want to build bridges between patients and doctors who can attend in their country of origin. Therefore, all patients with pheochromocytoma/paraganglioma syndrome and doctors who want to help are welcome to join PHEiPAS.
At a medical and scientific level, the PRESSOR and ENSAAT are two scientific groups formed by doctors, who are studying PHEOs / PGL syndromes (feocromoctioma / paraganglioma) .They perform a periodic monitoring of affected patients and meet every three years to report on the progress on these diseases at the International Paraganglioma Symposium (IPS), of which four editions have been held until today. The symposium was started primarily by Dr. Karel Pacak of the National Institutes of Health (NIH) in Bethesda, Maryland. Dr. Pacak is the leading authority in the knowledge and research of these tumors at an international level . These working groups have made numerous approaches in the early intervention of the syndrome, showing that it is less expensive to make a follow-up protocol for those affected than to let the disease run its course and then intervene.