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…
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…
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 a story from CheckOrphan, Express Scripts has prepared a Rare Conditions Care Value (RCCV) program. This program is designed to help make the diagnosis and treatment process for…
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…
According to PRNewswire, Express Scripts announced a new program to benefit people living with rare diseases on May 31st. The program, called Second Opinion is part of the company’s larger…
He was billed as "The 8th Wonder of the World," and this month a new documentary on the legendary WWE wrestler, André the Giant, premiered on cable outlet HBO. According…
At the age of 28, Suzy remembers medical students feeling her puffy hands and feet. Her feet were so expanded she had to wear wide shoe sizes. Her fingers were…
Read Part 1 of Amy's Acromegaly Story here. The doctors told me that they felt the surgery removing the tumor was successful, but because of the position and size of…
My name is Amy, and I’m a 37 year old single mom of two beautiful girls, ages 8 and 13. I work full time as a business analyst for a…
Midatech Pharma just received verbal confirmation from Polish regulators to conduct the first European in-human study for a treatment that could potential aid those with carcinoid cancer and acromegaly, reported…
In 1994, Deanna Babiuk-Black began to feel sick very frequently. Her typical care-free personality was being challenged with illness and her personal words to live by "take a negative and…
When is acromegaly like a scene from a movie? I know it's a stretch, but bear with me. I rarely go to the movies, you know, in a movie theater.…
It is Patient Worthy’s pleasure to report on the first International Acromegaly conference which brought together acromegaly support groups from East and West Canada,- The Vancouver and Atlantic Acromegaly support…
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