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        Get the latest news from Pituitary World News, a non-profit organization that seeks to increase awareness and reduce the number of undiagnosed and misdiagnosed people with a debilitating pituitary disease. PWN publishes regular blog posts and podcasts on pituitary diseases and treatments with the world's leading experts.

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Advocacy Zone

For patient support groups and advocates to share their stories, best practices, collaborate and get involved.

Subscribe to PWN and get the latest posts in your inbox

Diagnosed with a rare disease — now what?

September 16, 2026
Advocacy Zone|
From J D Faccinetti, cofounder and chief editor - My guest today on the Pituitary Podcast is someone I've had the pleasure of knowing since 2019, Risa August. Risa is a patient advocate, an author,

Can oversharing information be the best medicine?

July 1, 2019
Acromegaly|Advocacy Zone|Patients' Corner|Podcasts|

Jay Libove, a privacy and security expert, and pituitary patient discusses privacy and sharing information on social media In today’s new age of digital medicine and near-universal availability of information, we need to be conscious

From The Netherlands, AdrenalNET: a comprehensive website for Adrenal disorders

June 24, 2019
Advocacy Zone|News From Around the World|

If you suffer from an adrenal disease or would like to learn more about it, AdrenalNET offers comprehensive, reliable, easy to access scientific and general information.  AdrenalNET is an initiative founded in The Netherlands and fast

How Can I Find a Mental Health Professional Who Knows About Pituitary Disorders?

June 6, 2019
Advocacy Zone|Mental and Emotional Health|Patients' Corner|

From Linda M. Rio, M.A. – I woke this morning to find an email to me from a parent pleading for my help. This parent has an adult child who had a pituitary tumor removed

Another year at the UC Berkeley-UCSF joint medical program.

May 12, 2019
Advocacy Zone|Patients' Corner|

There are many things about the work I do for Pituitary World News that are very rewarding and truly enjoyable. Meeting young, bright medical students is one of them. Almost every year since my diagnosis

The voice of the patient in action.

May 7, 2019
Acromegaly|Advocacy Zone|Dr. Blevins Corner|Patients' Corner|

Breakthrough symptoms & continued growth with controlled igf1. It probably ties into igf1 assays/variables not being reliable or checked as often as needed “Took me 12 years to find someone to remove mine because of

Patient Perspectives on the Impact of Rare Diseases: Bridging the Commonalities

April 10, 2019
Advocacy Zone|

The Food and Drug Administration (FDA) is hosting a public meeting and an opportunity for public comment on “Patient Perspectives on the Impact of Rare Diseases: Bridging the Commonalities.” This public meeting is intended to

Misinformation and Bias: Additional Perspectives

April 3, 2019
Advocacy Zone|Mental and Emotional Health|

From the desk of contributor Linda M. Rio, M.A. Marriage and Family Therapist – Pituitary World News editor, J D Faccinetti, recently published an article that hit a nerve with me. I called him to let

The susceptibility of social media groups to believe and advocate for false, erroneous, and sometimes dangerous information.

March 1, 2019
Advocacy Zone|Patients' Corner|

From PWN Co-founder J D Faccinetti – In a recent paper from the National Academies of Science of the United States of America,  “The spreading of misinformation online”the authors made quite a dire statement.  “Digital

Pituitary patients weigh in on telemedicine’s pros and cons

January 5, 2019
Advocacy Zone|Patients' Corner|Podcasts|

Today we discuss the findings of the recently conducted patient survey on telemedicine.  The survey shed some light on critical patient perspectives and perceptions, to help us arrive at some initial conclusions, and identify areas

Researchers at Stanford University are currently recruiting individuals with hypothalamic-pituitary disorders to participate in a research study

November 20, 2018
Advocacy Zone|

Commentary: Rogue Doctors and Boundaries

October 8, 2018
Advocacy Zone|News Feed|Patients' Corner|

A commentary by J D Faccinetti cofounder– In this day and age of hyper communications, internet speed, ultra-connected populations, and copious amounts of easily accessible content, bad information is rampant. That’s a problem. A big

PWN participates in the Spanish Association for People with Acromegaly conference

September 25, 2018
Acromegaly|Advocacy Zone|News Feed|News From Around the World|

From the desk of J D Faccinetti, co-founder – Many new wonderful friends, new perspectives and a ton of energy dedicated to increase awareness and reduce the time to diagnosis; that’s the best way I

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Pituitary World News is a non-profit organization that seeks to increase awareness and reduce the number of undiagnosed and misdiagnosed people with a debilitating pituitary disease. PWN’s sole reason for being is to help diagnose people properly and early by increasing awareness of pituitary disorders and providing a platform for communications, collaborations, creativity, and innovation.

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