I am a research psychologist who conducts studies among doctors and patients about different disease states and their treatments. In a recent study regarding acromegaly I reached out to Acromegaly Community membership to learn more about their experience overcoming a disease that for many can be life-long and affect all aspects of their health and well-being. To my happy surprise I found the Acromegaly Community to be very well organized and run with a dedicated staff of volunteers and board members. Not only did I feel that the group was well run, but the members appear to gain so much from the connections and support that it provides. Community members that I met were so well focused on putting their disease behind them and getting the most out of life that it became apparent that their connection and interactions through this group were integral to their happiness and positive outlook. As a group they were better educated about treatment options and the need to take ownership of their health and progress than non-members who I discovered through other channels. The experience of meeting and learning about the group was so positive that I have since mentioned them to acromegalics and health care professionals as an important resource.
3,176 Pageviews Read Stories
- EIN 27-2116493
- 716- 844-8780
- 432 Amherst Street 2nd Floor Buffalo NY 14207 USA
- www.acromegalycommunity.com
- Facebook page
- acrocommunity
- Add to Favorites
Promote This Nonprofit
Nonprofit Overview
Causes: Health
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.