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关于我们
Founded in 2007, the Pheo Para Alliance, a 501c3 organization, is the longest-standing internationally recognized leader in advocacy for, and awareness of, pheochromocytoma (pheo) and paraganglioma (para). Since its inception, the Pheo Para Alliance has dedicated more than $2 million towards research, diagnosis, education, advocacy, and finding a cure. The Pheo Para Alliance mission is to empower patients with pheochromocytoma or paraganglioma, their families and medical professionals through advocacy, education and a global community of support, while helping to advance research that accelerates treatments and cures. 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. 1 in 3,000 will develop a pheo or para sometime 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 outside the adrenal glands, 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. Currently, there are approximately 20 genetic mutations identified that can be attributed to a greater risk of developing the illness, and can be passed down through children. Everyone diagnosed should talk to their doctor about genetic testing.
- 网站
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https://www.pheopara.org
Pheo Para Alliance的外部链接
- 所属行业
- 非盈利组织
- 规模
- 1 人
- 类型
- 非营利机构
- 创立
- 2007
Pheo Para Alliance员工
动态
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?? Today is #NETCancerDay! ?? Today the neuroendocrine cancer community speaks in one global voice to raise awareness: Take a closer look at neuroendocrine cancer! ?? Watch and share the messages of NET patients from all over the world! ?? Today, we appeal to doctors to consider NETs through the common symptoms to deliver early diagnosis. ?? Join us in spreading awareness and knowledge about NETs: https://lnkd.in/dy4DZBTq ?? Create your personal custom poster with the slogan in your language and post it in your feed: https://lnkd.in/dgUJxyJC #LetsTalkAboutNETs #NETCancerDay #NeuroendocrineCancer #ThinkNENs
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Every Shamus knows: Your mutation is like an informant that gives your HCP clues about how your disease might progress, your risk of other kinds of tumors and what treatments might be effective. #MysteriesOfThePheoParaVerse #PheoParaAwarenessWeek #genetics #inheritedcancer #pheochromocytoma #paraganglioma
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Detective work by our researchers suggests that pheos are underdiagnosed, but it's undisputed that 100% of those with pheo para need support, current information, and care from an experienced multidisciplinary team. #MysteriesOfPheoPara #PheoParaPhearless #PheoParaAwarenessWeek #pheochromocytoma #paraganglioma
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Lifelong monitoring is critical! All pheos and paras can recur even after many years of remaining tumor-free and cause serious health problems or even metastasize if left untreated. #MysteriesOfPheoPara #PheoParaAwarenessWeek #pheochromocytoma #paraganglioma
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Test your knowledge about #pheochromocytoma and #paraganglioma by taking our Healthcare Provider Quizzes! This year we have two levels, Gumshoe and Ace Detective. For the Gumshoe Edition, follow this link: https://bit.ly/3WZjHdU Think you have the chops to make Ace Detective? Click here and find out: https://bit.ly/3WYFl20 Don't forget to tag us when you're done and let us know how you did! #MysteriesofPheoPara #PheoParaverse #PheoParaPhearless #inheritedcancer #rare #CarotidBodyTumor #GlomusJugulare #GlomusTympanicum #GlomusVagale #PheoPara #PheoParaAwarenessWeek #gumshoe #AceDetective #HCPQuiz #HealthcareProviders
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#Pheochromocytoma and #paraganglioma are rare but serious tumors that can produce excess hormones. The non-specific clues they leave - #headache, #hypertension and #sweating – can make a detective’s job tough. Visit our website for all the info a gumshoe needs to find what he’s after: www.pheopara.org #MysteriesOfPheoPara #FollowTheClues #SolveTheMystery #MedicalMystery #PheoParaAwarenessWeek #pheoparaphearless #PheoParaPhearless #pheochromocytoma #paraganglioma
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The 5th Annual Pheo Para Awareness Week is underway!! Are you ready to hit the streets, gumshoes?! We've got you covered with a toolkit that includes the wire on Pheo Para Awareness Week, who's involved, what we've got planned, profile images, social media posts and captions, and more! Download it now, and help spread the word about those slippery perps #pheochromocytoma and #paraganglioma: https://lnkd.in/g8P9peSa #PheoParaAwarenessWeek #PheoParaverse #MysteriesofPheoPara #PheoParaPhearless
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TODAY: Learn about the curious case of Mina Roll in "Pheo Para Detective Case File: An Unsolved Mystery from History," premiering LIVE ON YOUTUBE today, August 26th, 2024, at 4 PM Pacific/7 PM Eastern! https://lnkd.in/g5PJj8v4 #MysteriesofPheoPara #PheoParaverse #pheochromocytoma #paraganglioma #PheoParaPhearless #inheritedcancer #rare #CarotidBodyTumor #GlomusJugulare #GlomusTympanicum #GlomusVagale #PheoPara #PheoParaPhearless #unsolvedmystery
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Happening NOW: the 5th Annual Pheo Para Awareness Week kicks off with the LIVE YouTube premiere of our campaign video at 6 AM Pacific/9 AM Eastern! https://lnkd.in/grg9nxMG