Dana-Farber Cancer Institute/Brigham and Women’s Hospital Designated as Rare Disease Clinical Center for Pheochromocytoma & Paraganglioma
Pheo Para Alliance, a patient advocacy organization dedicated to supporting those with pheochromocytoma (pheo) and paraganglioma (para), a rare neuroendocrine tumor, has designated Dana-Farber Cancer Institute/Brigham and Women’s Hospital as a Pheo Para Clinical Center. The Center of Excellence Program recognizes institutions worldwide for providing cutting-edge, quality, multi-disciplinary 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 twelve, ten in the U.S. and two in the U.K.
The PPGL clinic at Dana-Farber Cancer Institute/ Brigham and Women’s Hospital is a collaboration amongst providers in the Jimmy Fund Clinic, Cancer Genetics and Prevention, the Neuroendocrine and Carcinoid Tumors Program, and the Center for Adrenal Disorders. It offers a multi-disciplinary approach to care based on each patient’s unique situation with the goal to improve the lives of people and their families by offering a comprehensive range of services based on specialized treatments and innovative research.
“We are honored to be bestowed this distinction, as it recognizes our mission to provide comprehensive, multidisciplinary care to patients with this very rare disease, as well as highlight the ongoing efforts by the collaboration between Dana-Farber and Brigham and Women’s to accelerate bench to bedside research,” said center co-directors Kimberly Perez, MD, Dana-Farber, and Anand Vaidya, MD, MMSc, Brigham and Women’s.
Stephanie Alband, Executive Director, Pheo Para Alliance, states, “Pheo Para Alliance is honored to welcome the highly-regarded Dana-Farber/Brigham and Women’s center to our program. The Medical Advisory Board and patient representatives are especially impressed with the program’s caring and compassionate, experienced, multidisciplinary team. We look forward to a long relationship together, improving the lives of those affected with pheo and para.”
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.
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.
*This press release was adapted from a press release issued by the Pheo Para Alliance.