News and information for patients.
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
From Jorge D Faccinetti, cofounder – Our recent One-Question survey on emotional and mental health got quite a bit of attention. Thank you to the many PWN readers who wrote and shared very personal, often
From JD Faccinetti – cofounder – Pain, especially chronic pain, is the consummate mind-body disease where sensation and emotion become inextricably intertwined, says the University of California at Davis pain specialist Dr. Scott Fishman. The aches
From J D Faccinetti, cofounder: The endocrine team at Pfizer delivered some very smart changes to the Somavert injection delivery system, now with a diluent prefilled syringe. If you use Somavert let us know your
From J D Faccinetti, cofounder – Now that the Holidays are over is always advisable to regroup and take notice of all that advice we tend to get during the Holidays. Some good, some not
and I’ve Got a Tumor! From Linda M. Rio, MA, MFT – What do you suppose the Hallmark Channel version would be with this title? Probably not filled with pretty snowy scenes and smiley faces.
This is a fascinating talk between three acromegaly patients. Their frank discussion gives a poignant look into the world of living with a chronic condition. The “Straight Talk Acromegaly” live panel discussion recently broadcasted by
From Jorge D Faccinetti – cofounder – Once again this past weekend I had the privilege of presenting the patient perspective and experiences to a group of physicians including endocrinologists, primary care docs, and other
And to mark the occasion we thought it would be fun to participate in the “A Day in my Acromegaly Shoes” initiative. This is a fun program sponsored by Novartis, designed to increase awareness of Acromegaly.
The Global Genes Rare patient advocacy Summit was held last month in Southern California. The conference was packed with presentations and events that give patients, caregivers, and advocates the tools they need to be better informed and
Being Rare From Dan Jeffries, writer, author – “It might sound a little perverse, but I feel almost lucky to have experienced two rare medical conditions in my life. The first was Wyburn-Mason syndrome, a
Today we begin a new series of feature articles that highlight the tireless work that people do to help others. Here are three amazing human beings: Jill Sisco runs the Acromegaly Community website and