Acroline™ is a series of four brochures created by Pfizer in collaboration with an international panel of people with acromegaly, acromegaly support groups, and health psychologists. This series of supportive guides and tools are designed to help keep your life on track and live well with acromegaly.
For patient support groups and advocates to share their stories, best practices, collaborate and get involved.
Big news for acromegaly at Crinetics
From the desk of J D Faccinetti – co-founder – The company recently kicked off a phase 3 trial for their new nonpeptide oral drug for acromegaly and announced the dosing of their first acromegaly
It’s time to fix this mess, but first we have to understand it
Pituitary World News has undertaken an initiative to understand and share the complicated issues related to access to medications and costs so pituitary patients can join us in advocating for better healthcare systems. In that mesh of confusion, we find insurance companies, orphan drug manufacturers, specialty pharmacies, pharmacy benefit managers, also known as PBM’s, prescribers, and others that add to the costs and complicate access. The issues get even murkier when considering patients on Medicare, Medicaid, pricing models, and copay requirements.
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
Advocating Big and Advocating Small…It’s all Important!
From Linda M. Rio, MA, Marriage & Family Therapist – A patient who attended the recent PWN/UCSF Virtual Patient Gathering – presentation videos are available here – contacted me to ask for some guidance about finding
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
The Road to MYCAPSSA: A Conversation with Dr. Bill Ludlam
Telemedicine and COVID-19, insights from our survey
Not surprisingly, COVID-19 appears to have significantly impacted pituitary patients’ access to healthcare. Our brief survey elicited information from respondents on their experiences and attitudes towards obtaining healthcare via telemedicine. Dr. Blevins shares the findings
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.
A talk with Crinetics Chairman Scott Struthers, Ph.D.
During these trying times, work continues, even at a faster pace, for new drugs and therapies for pituitary patients. From the J D Faccinetti, co-founder – We recently caught up with Crinetics Pharmaceuticals chairman Dr.
A discussion on telemedicine and pituitary disease
Important changes in telehealth visit regulations provide an excellent opportunity for patients to receive consultations from highly experienced specialists in pituitary disease. Read on! On Monday, November 16, 2020, doctors Lewis Blevins and Sandeep Kunwar