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.
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From the desk of J D Faccinetti, co-founder, an op-ed – The whole thing about misinformation is that it is dangerous. More specifically, people can get hurt, needlessly sick, and die following internet quacks’ advice. Since
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
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.
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
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
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
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
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
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
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.