Online Webinar: Protocol for Acromegaly Patient Care With Deanna Badiuk, Speaker October 7, 2022 After being diagnosed in 2008 with Acromegaly and realizing there was no support group in Western…
On September 9, 2022, researchers presented data at the European Neuroendocrine Association (ENEA) meeting. According to Yahoo! Finance, one such presentation centered around new safety and efficacy data from the…
Written by Muriël Marks, Executive Director, World Alliance of Pituitary Organizations History Between 2012-2014, Novartis started to send out personal invitations to acromegaly and Cushing’s patient advocates to represent their…
A recent article highlighted the story of the world’s tallest man Sultan Kösen, in which it was revealed his growth is attributed to pituitary gigantism. Pituitary Gigantism Gigantism, also…
Clinical trials are useful not only for initially establishing the efficacy of treatments for rare diseases, but for demonstrating that these results are durable as well. The MPOWER trial, which…
Acromegaly is a rare disease that is characterized by excess and abnormal levels of growth hormone (GH). Because of this, medical professionals are very interested in these levels as patients…
Acromegaly and gigantism are two disorders that share a main characteristic: abnormal growth. Because of this similarity, many people confuse one for the other. However, these are two distinct, separate…
Recent research has given us a better understanding of acromegaly, a rare hormonal disorder. Conducted by Maria Fleseriu, MD, FACE, and colleagues at the Pituitary Center at Oregon Health &…
Clinical trial results can help support drug developers' goals. For example, positive trial results may support Marketing Authorization Applications (MAAs) or other areas needed to get therapies into the…
According to an InBrief PDF from biotechnology and RNA-targeted therapeutics company Ionis Pharmaceuticals ("Ionis"), topline data from a Phase 2 clinical trial highlighted the benefits of cimdelirsen (IONIS-GHR-LRx) for patients…
The European Medicines Agency (EMA) recently received a Marketing Authorization Application (MAA) for Mycapssa, a maintenance therapy for acromegaly. Chiasma submitted the application, basing it on the results of their…
Near the end of June 2021, pharmaceutical company Crinetics Pharmaceuticals, Inc. ("Crinetics") shared via news release that the first patient had been dosed in the Phase 3 PATHFNDR-1 clinical trial.…
A recent study investigating treatment for adult acromegaly patients has revealed that switching from injectable somatostatin receptor ligands to oral octreotide leads to an improvement in quality of life and…
Welcome to the Rare Classroom, a new series from Patient Worthy. Rare Classroom is designed for the curious reader who wants to get informed on some of the rarest, most…
Happy Friday! This week we have a moving patient story about how one mother's pregnancy led to an acromegaly diagnosis. Also, have you heard of Hereditary Tyrosinemia Type 1? If not,…
Written by Anis Mohd Nor I first became a mother in 2017. The pregnancy was a bumpy one - while I felt blessed to be pregnant after several years of…
According to Healio, an open-label study of oral octreotide has reported that the treatment is able to maintain its response in acromegaly patients without additional safety signals. This data is…
In mid-November, The Assistance Fund (TAF) announced that they were beginning a copay assistance program for those with acromegaly. For nearly 11 years, TAF has worked to assist patients…
Happy Friday! November 1 is International Acromegaly Day. For those unaware, Acromegaly is a rare condition characterized by the presence of an elevated level of growth hormone and typically effects…
Acknowledgment: This story is sponsored by Chiasma, Inc. and is promoted through the Patient Worthy Collaborative Content program. We only publish content that embodies our mission of providing…
A new treatment for acromegaly has recently become available for patients. Called MYCAPSSA, this delayed-release capsule is intended for long term maintenance of acromegaly. Considering that injections are the typical…
As reported in Crwe World; the biopharmaceutical company Chiasma aims to create oral consumed therapies in order to provide acromegaly patients who have a chronic need for injections with an…
Happy Friday! We're about halfway through Stevens-Johnson Syndrome Awareness Month. It's a type of severe skin reaction that often involves admission to a burn unit for treatment. Looking for ways…
Kara LeFrance Kara LeFrance is diagnosed with acromegaly, a rare disease, and she's been battling it since she was 20 years old. Unfortunately, it took eight years after her first…
Living with a rare disease can be difficult for a myriad of reasons, one of them being financial. Treatments, appointments, tests, and everything else that comes with a rare disease…
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