Acromegaly Canada will be hosting its third national conference this fall. The event brings together individuals with acromegaly and gigantism, their family and friends, medical professionals, and inspiring speakers to address topics impacting our community.
New research and treatments
Advocacy and awareness efforts
Lots of socializing and laughs!
The Acromegaly Canada Conference will be held September 16 to 18, 2022, at the Sheraton Vancouver Airport Hotel in Richmond, BC.
The Canadian Acromegaly Registry is a Canada-wide registry that collects information from people diagnosed with acromegaly. Information on quality of life is collected directly from the patients and medical information is collected in specialty medical clinics. The information is then used in a variety of ways to better understand acromegaly and improve how the disease is diagnosed and treated.
Some potential benefits of joining the Canadian Acromegaly Registry include:
Help find meaningful treatments for acromegaly
Help improve care for individuals affected by acromegaly
Learn about other important research in acromegaly
Anyone living with acromegaly and residing in Canada is eligible to join. Your participation in the registry is completely voluntary, confidential, and free of charge. You can withdraw at any time.
Acromegaly is a rare disease that results from excessive secretion of growth hormone (GH) from the pituitary gland, usually caused by an adenoma (excessive growth of normal cells). It has serious, life-altering implications for the patient and can impact quality and longevity of life. Acromegaly is treatable. Early diagnosis is key to treatment success.
Acromegaly is characterized by a broad range of manifestations. A recent study has identified three manifestations that were frequently present at diagnosis: morphologic manifestations (83.7–87.9% patients), snoring syndrome (81.4% patients), and fatigue (79.2% patients). The study also reported that there is a discrepancy between patient- and physician-reported manifestations (see table 1).
Table 1: Frequency of some manifestations of the disease at the time of acromegaly diagnosis as reported by patients and doctors
Acromegaly Awareness Day
Acromegaly Awareness Day on November 1st was launched in 2015 by Jill Sisco, President of Acromegaly Community (USA), in recognition of Tanya Angus and others who have passed and who brought awareness to the disease. Tanya Angus passed away on January 14, 2014; she was 34 years old. Tanya Angus was a patient that was forthcoming with her acromegaly history and created awareness around acromegaly, through social media, TV and a website.
Years later, we still have approximately 80% of patients receiving a diagnosis too late to resume a full normal life. This is not acceptable and there is a need to continue awareness activities. This is particularly true given the fact that treatments discovered in the last ten years make a huge difference, and a significant portion of us can now be in remission.