Pheo Para Alliance, a patient advocacy organization dedicated to supporting those with pheochromocytoma (pheo) and paraganglioma (para), a rare neuroendocrine tumor, has designated The University of Texas Health Science Center at San Antonio (UT Health San Antonio) as a Pheo Para Center of Excellence. The Center of Excellence Program recognizes institutions worldwide for providing cutting-edge, quality, multidisciplinary care and participating in pheo and para and related research. The announcement of this center brings the total list of Clinical Centers and Centers of Excellence to 11, with more announcements coming soon.
“Pheo Para Alliance is thrilled to bring UT Health San Antonio on board as a Center of Excellence,” said Eli Soto, chairman of the Board of Directors. “As the first center in the south-central part of the United States, we are excited to share this exceptional clinical center with our pheo and para patients, and we applaud their outstanding research efforts.”
The UT Health San Antonio Pheo Para Multidisciplinary Clinic is a collaboration of UT Health San Antonio and its Joe R. and Teresa Lozano Long School of Medicine; the Mays Cancer Center, home to UT Health San Antonio MD Anderson Cancer Center; UT Health Physicians, the clinical practice of the Long School of Medicine; and exemplary clinical partner University Health, which includes University Hospital.
Providing the care that is needed
“We are delighted with this recognition by the Pheo Para Alliance and honored to serve the clinical and research needs of patients with pheo and para in the south-central U.S. This Center of Excellence designation is crucial because there are few resources available to patients with rare tumors,” said cancer biologist Patricia Dahia, MD, PhD, tenured professor in the Long School of Medicine and the clinic’s co-director and research principal investigator. “It is very important to have a team of professionals, as we do, who understand pheo and para, know their complexities, and have experience guiding patients and families through the multidisciplinary care that they need.”
Endocrinologist Gustavo Armaiz-Peña, MD, of UT Health San Antonio and University Health, is the clinic director. He said, “It is not beyond reach for patients to be managed very well, but there has to be a team that is knowledgeable of the disease and can provide all the necessary care. We have that team here in San Antonio.”
More clinical trials
The Pheo Para Center of Excellence designation will enable the team to expand therapeutic research studies offered to Hispanics and other patients who are under-represented in most clinical trials, Dr. Dahia said. Hispanics are the majority population in San Antonio and are increasing in number throughout Texas and the U.S. Southwest.
Pheochromocytomas and paragangliomas often are benign tumors, but between 10% and 20% can be malignant, Dr. Dahia said. “So, it is important to diagnose early and continue to follow up these patients,” she said.
These cancers affect people throughout life, from childhood to senior adults. Children with the inherited form of pheos and paras may develop the disease around the age of 5, Dr. Armaiz-Peña said. “Children may not have manifested the disease yet but are at risk genetically and need to be diagnosed,” he said. “It is important to do so for prevention.”
About one-third of patients carry a hereditary mutation of one or more genes. Von-Hippel Lindau (VHL) syndrome is an example of a disease that may include pheos or paras. Tumors may impact 10 or more different types of tissues, including kidney, thyroid, liver, ovary, pancreas and brain. The Mays Cancer Center is recognized as a VHL Clinical Care Center by the VHL Alliance.
Click here to read the inspiring story of a young girl living with Von-Hippel Lindau syndrome.
Dr. Armaiz-Peña did his endocrinology fellowship at UT Health San Antonio starting in 2017 and joined the Long School of Medicine faculty in 2019. He sees patients at UT Health Physicians and University Health clinics.
Dr. Dahia joined UT Health San Antonio in 2005 from the Dana-Farber Cancer Institute in Boston.
The Multidisciplinary Clinic team includes expertise in adult and pediatric endocrinology, surgery, genetic counseling, adult and pediatric oncology, nuclear medicine, radiation oncology, interventional radiology, nephrology and pathology.
Desire to serve
Ultimately, it is a labor of love for the team, whose members have deep compassion for families who endure so much.
Dr. Dahia no longer sees patients, preferring to focus on her National Institutes of Health-funded research of pheos, paras and other rare tumors. “My interest to study it started back in my native Brazil when I saw the patients, and I encountered, in particular, a very large family that became my main project for many years. We were able to find the gene that caused the disease in this family, and that led us into expanding our research to other genes. Thirty years later, I am excited with the progress and the prospects that lie ahead to better understand and manage pheo para.”
About Pheo Para Alliance
Founded in 2007, the Pheo Para Alliance, a 501c3 organization, is the longest standing internationally recognized leader in advocacy for, and awareness of, pheochromocytoma and paraganglioma. Since its inception, the Pheo Para Alliance has dedicated more than $2 million to fulfill its mission to empower patients with pheo or para, their families and medical professionals through advocacy, education and a global community of support, while helping to advance research that accelerates treatments and cures. For more information go to www.pheopara.org.
About Pheo Para
Pheo and para are rare slow-growing neuroendocrine tumors. Approximately 1 in 3,500 will develop a pheo or para in their life. Pheos develop in cells in the center of the adrenal gland just above the kidneys. Paras develop most commonly, in the head, neck, chest, abdomen, or pelvis. Both can produce an excess amount of hormones called catecholamines. This leads to symptoms such as high blood pressure, severe anxiety, sweating, headaches, and even stroke and heart attack. If left untreated, metastasis can occur, ultimately leading to death. But, if detected early, pheo and para can be successfully treated in the vast majority of cases. Up to 40% of all pheos and paras diagnosed are the result of a genetic mutation that leads to a greater risk of developing the illness and can be passed down through children.