PRESS RELEASE
The Pheo Para Alliance Launches 2nd Annual Pheo Para Awareness Week, August 23 – 27, to Raise Awareness Internationally for Rare Disease Community.
August 14, 2021
The Pheo Para Alliance has announced the 2nd annual campaign to raise awareness for pheochromocytoma (pheo) and paraganglioma (para), rare neuroendocrine tumors, will take place August 23 – 27. The objectives of this week-long campaign are to inspire & empower pheo para constituents to tell their story, raise awareness of the illness among health care providers, educate pheo para patients, and build understanding of the struggles presented by pheo para.
“Given the success of last year’s inaugural campaign, we are excited to raise even more awareness through creative, engaging and educational activities. Our themes are #youarenotalone, #rarebutreal, and #notoneanddone. Each theme is designed to raise awareness of different facets of this complicated illness,” says Eli Soto, Pheo Para Alliance Board of Directors Chair and patient.
A critical element to the success of the campaign will be participation by pheo para constituents, not only patients and caregivers, but clinicians, researchers, industry, and medical societies. A toolkit will be released in the middle of August to support the efforts of participants which will include; a healthcare provider quiz, patient locator map, You Are Not Alone Video, patient polls, Zoom flash mobs and more.
About Pheo Para Alliance
The Pheo Para Alliance is a registered 501(c)3 nonprofit patient advocacy organization, whose 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. Founded in 2007, the Pheo Para Alliance is the longest-standing and leading organization internationally recognized in advocacy for, and awareness of, pheochromocytoma and paraganglioma.
About Pheo Para
Pheo and para are rare neuroendocrine tumors that occur in both men and women of every race. They can occur at any age, but mostly occur in the third to fifth decade in life. Both produce an excess amount of hormones called catecholamines which result in symptoms such as high-blood pressure, headache, profuse sweating, heart palpitations, severe anxiety, a sense of doom, and many more. Most tumors can be removed with surgery, but if left untreated patients can experience heart attack, stroke, kidney failure, and malignancy where tumors have spread to other parts of the body. Approximately 15% of tumors return after surgery, and approximately one in three cases are metastatic.
Pheo para is rare, approximately 1 in 3,500 people will be diagnosed in their lifetime. Because of its rarity, it is common for patients to not receive a diagnosis for years or even decades because symptoms mimic countless other illnesses.
All patients are encouraged to have genetic testing because approximately 1/3 of patients will have a genetic mutation. Patients who have a genetic mutation have a 50/50 chance of passing it on to their children.
Pheo Para Alliance Contact: Stephanie Alband, stephanie@pheopara.org
Patient Ambassadors are available for interview and to share their story.
A toolkit with assets will be available August 16.