From Jorge D. Faccinetti, co-founder and chief editor: Why can’t we address some of the most critical issues affecting healthcare today? These are not just other people’s problems. They affect us, our doctors, and our
Advocacy Zone
For patient support groups and advocates to share their stories, best practices, collaborate and get involved.
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.
Ionis Rare Disease Webinar series on Acromegaly
May 6, 2021
If you missed this fantastic event, here is an on-demand video you can watch at your leisure. In this second installment of the Ionis’ Rare Disease Webinar series, panelists discuss acromegaly, a condition in which
Advocating Big and Advocating Small…It’s all Important!
March 8, 2021
From Linda M. Rio, MA, Marriage & Family Therapist – A patient who attended the recent PWN/UCSF Virtual Patient Gathering – presentation videos are available here – contacted me to ask for some guidance about finding
A view of pituitary disease across the globe
February 28, 2021
From the desk of J D Faccinetti, co-founder – The World Alliance of Pituitary Organizations, WAPO is attempting to provide a world view of pituitary disease through a “mapping project” that asks member organizations to
A muse for Rare Disease Day
February 28, 2021
From Jorge D Faccinetti, co-founder – Today is Rare Disease day. It is encouraging and gratifying to see the many organizations that participate by acknowledging the day. Thank you for mentioning Rare Disease Day in
The Road to MYCAPSSA: A Conversation with Dr. Bill Ludlam
January 26, 2021
We recently had a chance to sit down with Chiasma Inc.’s Senior VP of Clinical Development & Medical Affairs, Dr. Bill Ludlam, to discuss his career and his work in rare diseases. Dr. Ludlam played
Telemedicine and COVID-19, insights from our survey
December 28, 2020
Not surprisingly, COVID-19 appears to have significantly impacted pituitary patients’ access to healthcare. Our brief survey elicited information from respondents on their experiences and attitudes towards obtaining healthcare via telemedicine. Dr. Blevins shares the findings
The unrecognized caveats of pituitary conditions
December 20, 2020
From Lewis S Blevins, Jr., M.D. – Today on Dr. Blevins’ Corner: An elderly man underwent removal of the thyroid gland many years ago due to an overactive thyroid as a result of a goiter. He