Jeremie Soriano – from Dwarf to Giant
For Part 1 of Jeremie's story, click here. I just want to share my rare disease story today! I used to be a theater actor and a performer on stage.…
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Jeremie Soriano – from Dwarf to Giant
Jeremie Soriano – An Acromegaly Story
I was diagnosed in 2021. It all started when I was hospitalized for about 3 weeks due to high blood glucose - Hyperglycemia. During my stay in the hospital, my…
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Jeremie Soriano – An Acromegaly Story
Rethinking What It Means to Live With Acromegaly
Acknowledgment: This patient story is sponsored by Chiesi USA and is promoted through the Patient Worthy Collaborative Content program. We only publish content that embodies our mission of providing relevant, vetted,…
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Rethinking What It Means to Live With Acromegaly
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New Data Available on Paltusotine for Acromegaly
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…
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New Data Available on Paltusotine for Acromegaly
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World Alliance of Pituitary Organizations: The Origin Story
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…
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World Alliance of Pituitary Organizations: The Origin Story
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Patient Story: Tallest Man in the World Attributes Height to Pituitary Gigantism
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…
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Patient Story: Tallest Man in the World Attributes Height to Pituitary Gigantism
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Study Update: Oral Octreotide for Adult Acromegaly Patients
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…
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Study Update: Oral Octreotide for Adult Acromegaly Patients
Study: Growth Hormone Levels are Higher in Postmenopausal Acromegaly Patients
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…
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Study: Growth Hormone Levels are Higher in Postmenopausal Acromegaly Patients
Acromegaly and Gigantism: Compare and Contrast
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…
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Acromegaly and Gigantism: Compare and Contrast
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Comorbidities and Concomitant Medications in Acromegaly
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 &…
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Comorbidities and Concomitant Medications in Acromegaly
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Positive MPOWERED Results Available on Mycapssa for Acromegaly
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…
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Positive MPOWERED Results Available on Mycapssa for Acromegaly
Phase 2 Data Shows Cimdelirsen Benefits for Acromegaly
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…
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Phase 2 Data Shows Cimdelirsen Benefits for Acromegaly
Marketing Authorization Application Submitted for Mycapssa for Acromegaly
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…
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Marketing Authorization Application Submitted for Mycapssa for Acromegaly
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First Patient Dosed in Paltusotine Trial for Acromegaly
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.…
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First Patient Dosed in Paltusotine Trial for Acromegaly
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Study: Oral Octreotide Provides Positive Results in Acromegaly Patients
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…
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Study: Oral Octreotide Provides Positive Results in Acromegaly Patients
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Rare Classroom: Acromegaly
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…
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Rare Classroom: Acromegaly
Editor’s Choice: Acromegaly, Cystic Fibrosis and Hereditary Tyrosinemia
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,…
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Editor’s Choice: Acromegaly, Cystic Fibrosis and Hereditary Tyrosinemia
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Oral Octreotide as a Treatment for Acromegaly
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…
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Oral Octreotide as a Treatment for Acromegaly
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TAF Launches Copay Assistance Program for Acromegaly
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…
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TAF Launches Copay Assistance Program for Acromegaly
Editor’s Choice: International Acromegaly Day
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…
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Editor’s Choice: International Acromegaly Day
Living With Acromegaly
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…
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Living With Acromegaly
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This Treatment Can Make Life Easier for Acromegaly Patients
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…
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This Treatment Can Make Life Easier for Acromegaly Patients
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FDA Approves Chiasma, Oral Treatment for Acromegaly
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…
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FDA Approves Chiasma, Oral Treatment for Acromegaly
Editor’s Choice: Rare Disease Art During COVID-19
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…
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Editor’s Choice: Rare Disease Art During COVID-19
Artist with Acromegaly Shares her Story and Art to Spread Joy During COVID-19
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…
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Artist with Acromegaly Shares her Story and Art to Spread Joy During COVID-19
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