Living with Acromegaly presents unique challenges for everyone involved. Wherever you find yourself on your personal journey, there are resources here to help you navigate these experiences together.
Here is a list of educational resources, and support communities that highlight the unique challenges faced by people living with Acromegaly and provide safe spaces to connect with others who are sharing similar experiences.
Acromegaly Symptoms Tracker
This symptom tracker may be a useful way to document your symptoms and serve as a reference at your next appointment. This is a tool to help you to prepare for your next appointment and is not intended to serve as medical advice. If at any time you experience severe symptoms, immediately contact your physician.
Download this free tracker to help you communicate with your healthcare provider about how your acromegaly affects your quality of life.
Since 2009, the Acromegaly Community has been compiling a list of trusted endocrinologists, neurosurgeons, neurologists, psychiatrists, otolaryngologists, pain specialists, family practitioners, etc. from around the globe. This interactive map is a tool to help you locate these trusted specialists in your area. Zoom in and click on the dots to see Acromegaly Community’s recommendations.
Acromegaly Community is an excellent resource for patients, their friends, and family to connect with others who are sharing similar experiences.
Their website is a wonderful place to learn about events, hear patient stories, and find useful information to help raise awareness about this rare disease.
They understand how difficult it is to find a doctor to “listen” and take your issues seriously. It’s difficult to find doctors familiar with Acromegaly, the signs, the systems, the issues that patients, families and friends face every day.
Acromegaly Community – Chat with a member of the community here.
Pituitary World News
Pituitary World News is a great resource on pituitary news and rare disease communities.
Pituitary World News was established in 2014 to educate the public regarding the pituitary gland and its disorders. Our aim is to bring state-of-the-art and up-to-date information to those seeking answers and information pertaining to health-related matters of importance to those with pituitary tumors and other disease processes. We have a footprint in various social media including Facebook, YouTube, and our very own news feed.
Pituitary World News – Chat
Pituitary Network Association
The PNA is an international non-profit organization founded in 1992 for patients with pituitary tumors and disorders, their families, loved ones, and the physicians and health care providers who treat them.
The PNA was founded by a group of Acromegalic patients in order to communicate and share their experiences and concerns. The PNA has rapidly grown to become the world’s largest and fastest-growing patient advocacy organization devoted to the treatment and cure of rare pituitary disorders.