Mission: It is our mission is to provide an emotional and communal support network for people touched by Acromegaly. We offer a central location for medical information on issues including surgery, medication, radiation and post diagnosis support. Most importantly, we provide a network of emotional support for Acromegaly patients, their friends and their family.
Target demographics: Patients, loved ones, and professionals touched by or involved with the rare disease of Acromegaly
Geographic areas served: Everywhere
Programs: Conference to educate the public and support research regarding the medical condition known as acromegaly.
I was diagnosed 24 years ago when my son was born. It was tough to be a young woman with a scary and disfiguring disease. To have a group like this that helps educate and support such a lifelong illness is too hard to put into words. I am still learning about my disease and receiving support for the hurdles I come across many years later. This group reaches out to families as well. All I can say is thankyou from the bottom of my heart.
when i was diagnosed with acro , i was scared and had no one to talk to who really understood what i was going through, then i found this group where i can read, ask questions, answer questions and rant without anyone judging me .