With the lead line of “There is more to my acromegaly than just numbers on a page” comes a new informational website from the Chiesi Global Rare Diseases patient support group. Rethink Acromegaly is a
Acromegaly
Acromegaly is usually caused by a noncancerous tumor. Middle-aged adults are most commonly affected. Symptoms include enlargement of the face, hands, and feet. Prompt treatment is needed to avoid serious illness. Drugs can reduce the effects of growth hormone. If needed, surgery and radiation may be used to remove tumor cells.
Exciting news in the world of Acromegaly new drug development
February 2, 2019
Recently we told you about Chiasma’s latest news in both Phase 3 clinical trials of oral octreotide capsules product candidates, which are well on the way. You can read more about the company and the
In the Spotlight: The Pituitary Society
January 28, 2019
From the Desk of JD Faccinetti – cofounder. Today in our spotlight section we take a look at The Pituitary Society, one of the leading scientific organization dedicated to the understanding of diseases of the
News from Chile and Ecuador
January 24, 2019
Margarita Vazques de Amoroso, founder, and president of Faeth in Ecuador sent us some information on their monthly meetings. “We try to get together monthly to share our experiences and knowledge about how to
PODCAST: A pituitary nurse story
November 20, 2018
Daphne Adelman is a clinical nurse specialist at Northwestern University. In her job at Northwestern, she manages and coordinates studies for pharmaceutical and National Institutes for Health-sponsored studies. Daphne’s work focuses on pituitary conditions like
On November 1, organizations around the world mark Acromegaly Day
October 30, 2018
Patient and advocacy organizations around the world are poised to recognize Nov 1 as Acromegaly Day with awareness programs that aim to spread information and awareness on this tough disease. The World Alliance of Pituitary Organizations – WAPO
Tulane University study aims to understand acromegaly physician/patient treatment perception gaps
October 24, 2018
A current study from Tulane University is attempting to study aspects of the management of acromegaly patients and their perceptions of treatment. The study is being conducted by Dr. Lizheng Shi. Dr. Shi has been
Telling a story with art and photography
October 10, 2018
From J D Faccinetti – cofounder – I met Santino Matrundola about a year ago in Vancouver at the Canadian Acromegaly gathering of physicians and patients. We were both asked to present, he his story
PWN participates in the Spanish Association for People with Acromegaly conference
September 25, 2018
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
More from Spain: Acromegalia conference packed with valuable information.
September 12, 2018
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
Stigma: “a mental or physical mark that is characteristic of a defect or disease”
August 29, 2018
An Opinion and commentary from JD Faccinetti, Chairman, and co-founder. I’ve always been interested in stigma, particularly the stigma associated with pituitary disease, and most notably with acromegaly. Watching the recent HBO special documentary about
Acromegaly and Cancer: An update
August 20, 2018
From the desk of Dr. Lewis Blevins, co-founder. In today’s podcast, Dr. Blevins discusses his views and experiences with acromegaly and cancer and reviews the latest study on the subject from Denmark. You’ll find a link to
Acromegaly Community 2019 National Conference: Save the date!
August 1, 2018
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