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…
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…
Too much of a good thing can be dangerous. For people with acromegaly, a rare disease caused by too much growth hormone (GH), an excess of this otherwise helpful growth factor can…
Causation vs. correlation. What does that even mean? If you ask your friend who majored in philosophy for a semester-and-a-half in college, you’ll probably get an explanation that sounds more…
We’ve all heard the expression, “A picture is worth a thousand words.” I once used it as an excuse to get out of drawing a new cover to Beowulf as…
It pays to have a friend who's a research endrocrinologist—especially when you have a rare and little-known disease like acromegaly. For Oregon-based teacher, Betsy Whispell, the friendship was a lifesaver. She…
What do you do when you have a disease called acromegaly that causes you to keep growing into a 7'1", 346-pound force of nature? If you're Dalip Singh Rana (aka…
Among the many uses of social media, medical diagnosis for rare diseases, for everything from acromegaly to Zellweger spectrum syndromes, may not be the first that comes to mind. But…
Growth spurts? As an overachieving parent, I couldn’t get enough of them. I was the kind of mom who wanted to remember each and every step toward adulthood. I didn’t…
If you or a loved one has acromegaly or suspected acromegaly, then this is a free webinar you won't want to miss. The webinar is hosted by the Pituitary Network…
In very recent news, the biopharmaceutical company Chiasma, Inc. announced that it has come to an agreement with the US FDA regarding the design of a phase III clinical trial…
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