From JD Faccinetti, co-founder and chief editor – I like to ramble, so here it goes. I was musing about how unique and essential this little gland is—the size of a pea, the pituitary runs almost
Patients’ Corner
News and information for patients.
Ionis Rare Disease Webinar series on Acromegaly
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
How Cushing’s Disease Helped Shape Sharmyn’s Wonderful Life
On Cushing’s Day, we share Sharmyn McGraw’s blog on her journey with the disease. From her Blog – “Now twenty-one years in remission from a pituitary adenoma tumor, Sharmyn McGraw, patient advocate, author, artist, and
Celebrating 20 years of patient support at the Pacific Neuroscience Institute
The Pacific Neuroscience Institute is celebrating 20 years of their pituitary patient support group! Ever since April 2001, when the first meeting was held, the institute, with Sharmyn McGraw’s help, has been conducting patient support
A view of pituitary disease across the globe
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
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
News from the California Center for Pituitary Disorders at UCSF
From our friends at UCSF: Read this great update with links to articles on telemedicine for patients with pituitary disorders, making surgery safer during the Covid-19 pandemic, common mistakes made when treating patients with central hypothyroidism,
The unrecognized caveats of pituitary conditions
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
Should we answer surveys, share our experiences, participate in drug trials, engage with others?
Joining a new drug trial, for example, is an action that can benefit many affected with a disease, particularly with a rare disease, where finding enough people for an adequate sample is very challenging.
Looking Forward: A Time of Hope for Pituitary Patients
From the desk of Linda M. Rio, MA, MFT – Marriage and Family Therapists and PWN contributor – Hope, in such a year as unique as 2020 is a more important word than ever not only for
From the Cushing’s Support and Research Foundation
From Leslie Edwin, president of the CSRF comes a fun way to raise funds for their important mission with fashion and stylish winter wear. The Cushing’s Support and Research Foundation has created some awareness merchandise,
On November 1 organizations around the world mark Acromegaly Day
Patients, advocacy, and healthcare organizations are promoting awareness of the condition around the world. The World Alliance of Pituitary Organizations WAPO Board decided to re-use the WAPO Acromegaly Awareness Campaign of 2019 to raise awareness on
Alternative Cushing’s syndrome treatment
Grzegorz Rosiak, M.D., an interventional radiologist from Warsaw Medical University, sends us a recently published article, “Percutaneous Adrenal Gland Thermal Ablation,” an alternative Cushing syndrome treatment. You can read more about thermal ablation of the adrenal gland