For patient support groups and advocates to share their stories, best practices, collaborate and get involved.
Today’s podcast covers my conversation with Jill Sisco, president of the Acromegaly Community, about the recent meetings with the Food and Drug Administration (FDA), the US governmental entity responsible for approving new medications. Our conversation focuses on the original meeting held in 2021 and a recent listening session where the AC provided additional feedback to the FDA.
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
Madrid, Spain: J D Faccinetti reporting. The Spanish Association of People affected by Acromegaly has a full schedule for this week’s conference in Madrid packed with a ton of information and help for patients. “We are delighted
From the desk of JD Faccinetti co-founder – On behalf of Dr. Lewis Blevins and myself, a big thank you to Engage Health for recognizing Pituitary World News as a Rare Disease Difference Maker™. The program recognizes individuals who
Interesting information and news for people living and dealing with pituitary conditions. Leptin: According to experts increasing Leptin sensitivity may help in weight loss. There is still much research needed to understand the puzzle that enables leptin
Leading patient support group Acromegaly Community announced they will hold their national patient conference in conjunction with The Pituitary Society Sixteenth International Pituitary Congress March 20-22, 2019 in New Orleans, Louisianna. “We are thrilled with this opportunity”, said
There is quite a bit of noise out there about Gene Therapy. What it is, how it works, what can it actually do? Some of the information is very good, some, not so good.
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
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,
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
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
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
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