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


Insurance issues and clinical trials
From Jill Sisco, patient advocate, president of the acromegaly community and PWN contributor comes this commentary on insurance out-of-pocket charges and an update on acromegaly clinical trials. As a patient leader, that runs a

NORD issues statement regarding insurance copays
Today the National Organization for Rare Disorders – NORD – issued a statement and provided a very useful explanation regarding the increasing use of copay accumulator programs in health plans. The NORD statement reads in part: “Recently,

Substandard drugs: In what world is this remotely acceptable?
Español From the desk of Jorge D Faccinetti Cofounder and Chairman, Pituitary World News – I recently learned that substandard drugs for acromegaly and other pituitary disorders are alleged to be making their way

PWN and WAPO in push to increase awareness of pituitary disease around the world
From JD Faccinetti, Co-founder, Chairman, and CEO – This year we participated in the World Alliance of Pituitary Organizations – WAPO 2018 – conference held recently in Venice, Italy. I’m happy to report on several initiatives. Our

World Alliance of Pituitary Organizations: April 2018 Newsletter
The World Alliance of Pituitary Organizations (WAPO) recently published their first newsletter for 2018 with a bunch of interesting pituitary organization’s articles from around the world. Andrei Andrusov, WAPO Chairman of the Board reviews a process

More on Opioids and Pain
In a recent podcast on acromegaly and arthritis, we discussed the opioid use crisis currently gripping the United States. The podcast focused primarily on arthropathy, articular, and joint problems associated with acromegaly. These are painful conditions that

PWN technology corner: A look at Telehealth
The Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services defines telehealth as the “use of electronic information and telecommunications technologies to support and promote long-distance clinical health care,

Future Doctors – 2018
From J D Faccinetti – Cofounder. This is a group of first-year medical students from the UC Berkeley-UCSF Joint Medical Program (JMP). I had the pleasure, as I’ve done every year since 2012, to meet

WAPO and PWN partner for pituitary disease awareness and action around the globe
From J D Faccinetti and Lewis S. Blevins, Jr., M.D. Founders – Pituitary World News is pleased to announce is joining the many WAPO members making a difference around the world in the effort to

More form the Canadian National Acromegaly Conference
Patient advocates and PWN panel Q & A session: Santino Santino Matrundola, Dan Jeffries and JD Faccinetti answer questions from the floor about living with acromegaly, advocacy, memoir writing and more. The Canadian National Acromegaly patient

What do you do if faced with this scenario?
From the desk of J D Faccinetti, co-founder PWN – You’re sitting at an airport. Suddenly someone sits next to you. You look. Then look again. The features. The hands. “Yes, I think this person

The Acromegaly Patient community gathers in Vancouver, BC for its first support group conference.
From J D Faccinetti – cofounder. In what is sure to be the first of many, Canada’s acromegaly community gathered in Vancouver for a two-day session filled with community, activity, and information. Patients, pituitary specialists,