Pheo Para Alliance Announces Launch of Center of Excellence Clinical Care Program to Improve Access to Care for those With Rare Disease
Bethesda, MD – Pheo Para Alliance is pleased to announce the launch of its Center of Excellence Program which will provide an environment where patients receive the best possible pheochromocytoma (pheo) and paraganglioma (para) care through a geographically diverse network of clinical centers. An open call for applications from interested healthcare institutions will open on January 1, with a deadline of March 15. The Medical Advisory Board, comprised of some of the world’s top pheo para physicians and researchers, created the program’s criteria with the goals of: increasing access to multi-disciplinary, coordinated clinical care for diagnosis and treatment of pheo and para, educating professionals and newly diagnosed patients and their families, and facilitating pheo para and related research.
Matthew Capogreco, Chair of the Board of Directors, states, “Overwhelmingly, patients who reach out to us want to know where they can be seen by pheo para experts. This program provides a platform to direct our patient community, with confidence, to top-notch centers. This will elevate the care they receive for generations to come.”
The program offers two designations. The Clinical Center designation recognizes emerging centers providing quality, multi-disciplinary patient care and facilitate pheo para research. The Center of Excellence designation, the higher of the two designations, recognizes centers providing cutting-edge, quality, multi-disciplinary care and actively participate in pheo para research. The Alliance plans to announce its first designated centers in early 2021.
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
Pheochromocytoma (pheo) and paraganglioma (para) are rare slow-growing neuroendocrine tumors. They occur in both men and women equally, and they affect every race of people. Approximately 1 in 3,500 will develop a pheo or para in their life. They can occur at any age, but the peak incidence occurs in the third to fifth decade in 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 persistent or episodic high blood pressure, severe anxiety, heart palpitations, sweating, headaches, and even stroke and heart attack. If left untreated, pheo para can metastasize, and ultimately, lead to death. But, if detected early, pheo para can be successfully treated and managed in the vast majority of cases. If possible, the treatment of choice for the condition is surgery to remove the tumor(s), but there are other treatment options. Approximately 35% of all pheo 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.
Contact: Stephanie Alband