For patient support groups and advocates to share their stories, best practices, collaborate and get involved.
This latest initiative from Pfizer’s Patient Affairs Liaisons team makes me think about collaborations and what that means for people with rare pituitary and endocrine diseases. The primary takeaway: when organizations work together, good things
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
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
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
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
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
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
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
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
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
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
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