From Lewis Blevins, MD, Neuroendocrinologist, Medical Director of the California Center for Pituitary Disorders, Professor of Neurological Surgery at UCSF and PWN cofounder – I’ve seen several patients recently who illustrate one of the basic,
Advocacy Zone
For patient support groups and advocates to share their stories, best practices, collaborate and get involved.
Adenomas or PitNETs: A Pituitary World News opinion editorial
August 29, 2022
From the desk of Pituitary World News co-founder J D Faccinetti – In November 2019, we wrote an opinion piece on the current discussion about reclassifying and renaming pituitary adenomas to Pituitary Neuroendocrine Tumors or PitNETs. Well, the rumblings about this change and the arguments from the proponents and opponents to the reclassification are continuing. Read more and vote!
What’s all this noise we hear about the voice of the patient?
August 2, 2022
An opinion editorial from J D Faccinetti, co-founder, on listening and interpreting without influencing – Progressive, innovative enterprises have been putting the voice of the consumer front and center in product and communications development since
A pituitary roundtable worth noting
June 8, 2022
Thank you to Sharmyn McGraw, Dr. Daniel Kelly, and the experts from the Pacific Neuroscience Institute, along with leading medical experts from Ohio State University Wexner Medical Center, for an excellent discussion and for the
Embracing self-advocacy
October 20, 2021
Becoming an empowered patient is an important part of health care. However, managing a care team while living with a rare condition may require some skill, and a toolkit may be helpful in navigating care.
Podcast – Ride for acromegaly: 1,200 miles down; 680 miles to go.
October 17, 2021
Music Composed and Produced by, MusicWorksFoundry(TM) (ASCAP). All Rights Reserved.
October is Pituitary Awareness Month.
September 29, 2021
From the editor’s desk – For organizations in the pituitary space, we believe it is critically important to reach out to a broader audience to make the case that these conditions, although classified as rare,
From the PWN founders
August 26, 2021
Photo by Towfiqu barbhuiya
Canada to Mexico: Rare pituitary disease patient bikes the 1845-mile Pacific Coast Highway
August 13, 2021
Music Composed and Produced by, MusicWorksFoundry(TM) (ASCAP). All Rights Reserved.
A look at the Orphan Drug Congress
August 4, 2021
Music Composed and Produced by, MusicWorksFoundry(TM) (ASCAP). All Rights Reserved.
The dangers and challenges of misinformation
July 30, 2021
From the desk of J D Faccinetti, co-founder, an op-ed – The whole thing about misinformation is that it is dangerous. More specifically, people can get hurt, needlessly sick, and die following internet quacks’ advice. Since
Big news for acromegaly at Crinetics
July 12, 2021
From the desk of J D Faccinetti – co-founder – The company recently kicked off a phase 3 trial for their new nonpeptide oral drug for acromegaly and announced the dosing of their first acromegaly
It’s time to fix this mess, but first we have to understand it
May 17, 2021
Pituitary World News has undertaken an initiative to understand and share the complicated issues related to access to medications and costs so pituitary patients can join us in advocating for better healthcare systems. In that mesh of confusion, we find insurance companies, orphan drug manufacturers, specialty pharmacies, pharmacy benefit managers, also known as PBM’s, prescribers, and others that add to the costs and complicate access. The issues get even murkier when considering patients on Medicare, Medicaid, pricing models, and copay requirements.