Learn more about us by navigating through the tabs.
Information about our mission, privacy policy and references are below.
Our Mission
Our 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 internationally recognized leader in advocacy for, and awareness of, pheochromocytoma and paraganglioma. Since our inception, the Pheo Para Alliance has dedicated more than $2 million towards research, diagnosis, education, advocacy, and finding a cure. Our program activities include the Center of Excellence Program, Education Webinar Series, national & regional conferences, one-on-one and monthly peer support, facilitating patient-centric research & more.
The Pheo Para Alliance is a registered 501(c)3 nonprofit organization, incorporated in the state of Virginia.
Pheo Para Alliance
(Donations & Official Correspondence)
3301 Richmond Hwy #1257
Alexandria, VA 22305
info@pheopara.org
Learn more about us using the navigation tabs on this page.
References
All educational information is vetted by our Medical Advisory Board (MAB) who provides insight, scientific and clinical direction, and expertise to the Pheo Para Alliance. The members of the MAB are recognized experts in pheochromocytoma and paraganglioma from leading academic and medical institutions around the world. Each of them devotes their time and expertise to improving the lives of people with pheo para.
In some cases, additional feedback is solicited from highly experienced clinicians and researchers who can provide insight into a specific area of pheochromocytoma and paraganglioma. Pheo Para Alliance also utilizes guidelines and relevant research as it is published. You can find more information on guidelines here.
Information resources are updated annually or, more frequently, when new national or international consensus guidelines are published.
Printed resources are generally updated and reprinted every 3 years, although reprinting may vary according to funding constraints.
Privacy
This is the web site of Pheo Para Alliance. Access is anonymous and free. The privacy of visitors is important to us.
Information Sharing
We do not share information that may identify a visitor without their prior permission. We use your information only for its intended business purpose. We do not sell or trade your information to other organizations or individuals.
Funding and Advertising
Our web site is funded by individual, corporate and foundation grants, sponsorships and donations. We do not share user information with our funding sources. We have no direct advertising on our site at this time. However, we use third party services including Constant Contact, Google, and Paypal which do have advertising. We cannot control the content of their advertisements.
Cookies
Some of our third party providers drop cookies on your computer to save your identifying information. For example, Paypal, which processes donations and transactions from our website, drops a cookie on your computer to maintain your individual information. This information is not shared with any third party.
Information Protection
Pheo Para Alliance takes every possible measure to ensure that your information is not compromised in any way. Online information is transmitted via a secure server using encryption technology.
If you choose to send us email, we may retain the contents of your email message, our reply and your email address as part of our ongoing customer service efforts. We reserve the right to contact you after you have contacted us and may send future email and/or surveys to you about Pheo Para Alliance. You may notify us via email if you wish to discontinue electronic communication.
Access Logs
We do not maintain access logs for the pages on our site. We have a simple hit counter on several pages which does not store IP information.
Mailing List and Member Database
The information you submitted to join our informational online mailing list is stored by Constant Contact, and is not shared with any third party. We keep your personal information as accurate, complete, and up-to-date as is required to fulfill the purpose(s) for which you provided us with your personal information. Upon request in writing, we will remove your personal information from our databases, except where legislation or regulation requires our retention of it (for example, charitable giving history tied to income tax receipts.)
Questions
If you have any questions about our website or our Privacy Policy, please contact us at info@pheopara.org