This page is especially dedicated to those affected by the syndrome pheochromocytoma / paraganglioma and their families, but also to doctors who have to treat patients at some point in their lives.
All the information has been carefully checked. The medical information has been provided by Dr. Isabel Tena García, who is an expert in this disease, and it is based on her own experience with affected patients. Publications by doctors and scientists in general who are researching about these tumors have also been taken into account by Dr. Isabel Tena.
What is PHEiPAS?
PHEiPAS is an association founded in late 2013 due to the growing demand in Spain and abroad to improve the diagnosis, treatment and quality of life of patients diagnosed with a subgroup of rare tumors (feocromocytoma and malignant paraganglioma, recurrent pituitary tumors, kidney cancer, GIST c-kit negative, differentiated thyroid carcinoma) but with a common molecular basis based on lack of oxygen in the cells due to their inability to use it properly. Treatment options when metastases appear are really scarce, not because of their aggressiveness but because their impact is negligible. Therefore, PHEiPAS aims are: help patients, inform the public and authorities about the existence of such rare tumors and promote research and medical super-specialization with the ultimate goal of improving the patients’ quality of life .
(PHEiPAS is the acronym for Pheochromocytoma and Paraganglioma Solidary Action.)
Why does PHEiPAS arise?
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.