This week’s news and article recap

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Recordati RD announced that a new indication for Osilodrostat for endogenous Cushing’s syndrome will be presented for FDA approval this fall. Read the company’s press release here. This is excellent news for Cushing’s patients, who will have more options. Osilodrostat, brand name Isturisa ®, is currently approved for Cushing’s disease. A series of papers will be presented at the ENDO 24 conference. PWN will be there to report. Stay tuned!

Dr. Blevins’s book,Cushing’s:  A Comprehensive Guide to Understanding a Devastating Condition”, is coming out very soon. Stay tuned for dates and where to get it.    In it, he shares, among other amazing content, his 40 years of diagnosing and treating patients with Cushing’s.  More info here. 

My podcast with Jill Sisco from the Acromegaly Community discusses their experience with the FDA patient listening sessions. It is very helpful to understand how patient insight is heard and included in developing new drugs. Listen here.

PWN contributor Linda Rio gives us a great perspective on mental health and pituitary disorders in this article. Don’t miss this very informative piece. Read it here

PWN presented a great webinar with Dr. Sandeep Kunwar and Dr. Lewis Blevins on Management approaches to craniopharyngiomas with the Raymond A. Wood Foundation. A recording is now available here.

Life with acromegaly can be a daunting experience, especially if it’s not diagnosed early and adequately. A whole set of related conditions can take hold, making everyday life a challenge, to say the least. A recent project from Chiesi perfectly highlights the struggles people with acromegaly can experience. The video, filmed at the recent Acromegaly Community meeting in Phoenix, gives viewers a clear, compelling picture of what it is like to control and live with this disease. Kudos to the producers and the acromegaly community for making this valuable resource available, and bravo to the people who took the time to share their stories. Please watch it and stay in touch.

Participate in this important survey to aid in providing more understanding of the needs of people with A Vasopressin-Deficiency ),formerly Diabetes Insipidus” and Histiocytosis, and those who care for them. This is a collaboration between advocacy groups, and Dr. Cihan Atila, Neuroendocrinology University of Basel, Switzerland, supported the process.  If you have experience in this area, sharing your knowledge and opinion is essential.  Click here to participate. A Spanish version is available at this link.

Coming up:

    • Don’t miss our roundtable discussion on Mental Health with Catherine Jonas and Linda Rio. These two pros are among the best mental and emotional health experts, and they provide a wealth of information and perspective on this subject.  Look for the podcast to be published next week.
    • Grand Rounds Episode 3 with a case of endogenous Cushing’s will be published in the next few weeks.  Watch episodes 1 and 2 here.
    • Our ultra-athlete friend, PWN contributor, person with acromegaly and author Risa August is on another bicycling adventure tear.  This time she’s riding El Camino de Santiago in Spain, one of my fave spots on earth!  We’ll catch up with Risa upon her return and get the skinny on her ride.  I am always amazed at her will and endurance as she is also coping with controlling her acromegaly, which as you can imagine, is a daunting task.

Please send us your comments and suggestions for content and a reminder to Donate if you can; every donation helps and is truly appreciated.

Important note: Try not to rely too heavily on social media for information. It’s always important to check the source and ensure the information it is vetted and reliable. There is a lot of junk out there. Misinformation and disinformation issues are real problems. Not to be ignored! Keep us posted, and if you see anything interesting, please send it to us. We will review it and provide comments.

 

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