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…
Just last month, the FDA approved MYCAPSSA for patients with acromegaly who have previously been treated with octreotide or lanreotide. As the first FDA-approved oral somatostatin analog, developer Chiasma…
According to a story from The Boston Herald, a new treatment for acromegaly called Mycapssa was recently approved by the US Food and Drug Adminstration (FDA). Developed by Chiasma, a…
Happy Thursday! This edition of the Patient Worthy Editor's Choice is coming to you a little early this week. If you're reading from the United States, we hope you enjoy…
As shared in Medscape, the FDA recently approved oral octreotide (Mycapssa) for the treatment of patients with acromegaly. These delayed-release capsules are the first approved oral somatostatin analog ever approved.…
Acromegaly Community Patient-Focused Drug Development Meeting April 28th, 2020 This Patient-Focused Drug Development meeting is designed as a convergence of critical FDA officials, acromegaly patients, pharmaceutical companies, and other relevant…
Rare diseases often go undiagnosed, which leads to a lack of treatment and support for those affected by them. People with acromegaly, a rare hormonal disorder, have called for change.…
On April 28th, 2020, Acromegaly Community, a nonprofit organization that is dedicated to supporting acromegaly patients, will be hosting a patient focused drug development meeting (PFDD). These meetings are an…
Since April 2019, I have been actively seeking out adults (18+) who are willing to publicly share their stories about their lives with rare and chronic diseases. I feel it…
According to a story from Medscape, a recent study published in the medical journal Pituitary has revealed a significant disconnect between acromegaly patients and their physicians. The study suggests that doctors…
November 1st is Acromegaly Awareness Day! Let's do our part by getting a deep dive into acromegaly and the resources available for the acromegaly community! What is Acromegaly? Acromegaly is…
The National Acromegaly Conference Canada September 27th-29th, 2019 "Knowledge is Power, for a Better Quality of Life" This event is geared towards the Canadian acromegaly patient community. Don't miss this…
According to a story from Pharma Times, the drug company Ipsen has recently made available a pre-filled syringe of its drug lanreotide (marketed as Somatuline) which will allow patients to…
According to a story from Markets Insider, the biopharmaceutical company Camurus has recently issued an announcement indicating that the US Food and Drug Administration (FDA) has accepted the company's Investigational…
In 2012 Tessa noticed a gap between her front teeth. She was a little confused. She had had braces when she was younger and her teeth hadn’t had any gaps…
The 16th International Pituitary Congress and The 2019 National Acromegaly Conference This year, the Pituitary Society and the Acromegaly Community have, on the basis of shared interest and common goals,…
The 2019 National Acromegaly Conference This acromegaly event is the ideal opportunity for patients, physicians, caregivers, and families to come together to learn more about acromegaly and the latest research…
Most biological drugs, including insulin, can't be taken orally, because enzymes and proteins cause the drugs to break down too quickly in the digestive system. For decades, the pharma industry…
This weekend Patient Worthy attended RAREfest, an event held in the UK by the Cambridge Rare Disease Network. It brings together patients and their families, researchers, doctors, and the public to…
According to a story from the Ottawa Citizen, Dianne Sauvé, who is 60 years old, learned six years ago that she has the rare condition acromegaly. Since she learned that…
November 1st is Acromegaly Awareness Day! What is Acromegaly? Acromegaly is a hormonal disorder characterized by significant, abnormal growth, caused by an excess amount of growth hormone, or GH. GH is produced…
An art exhibit held at the Galerie Gora in Montreal, Canada, has used photographs and short stories to share the experiences of eleven people with acromegaly. You can read the…
According to a story from globenewswire.com, the biopharmaceutical company Chiasma, Inc., recently announced that it has completed the enrollment of 135 patients for its Phase 3 clinical trial. This trial…
According to Financial Buzz Chiasma, Inc. has reached a new clinical stage in its development of a treatment for acromegaly. The trial, known as CHIASMA OPTIMAL, tests a treatment currently…
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