Connecting: Acromegaly Support Groups and Resources
On this page, you will find links to sites that provide:
Acromegaly Information
Your health care provider is your first source of information because he or she understands your individual medical needs. Still, the Internet can be a good source of information about acromegaly, and it provides a way for patients and families to "talk" with one another, and share feelings and resources.
AcromegalySupport.org
The Acromegaly Outreach Program, a support network for people living with Acromegaly, was founded in 2002 at Cedars-Sinai Medical Center, Los Angeles, California. This program now operates in conjunction with the endocrinology centers at New York University Medical Center and Massachusetts General Hospital.
American Association of Clinical Endocrinologists
For endocrinologists; recommended if you are already very familiar with acromegaly and endocrinology. Links to treatment guidelines, publications, and meeting calendars.
American Sleep Apnea Association
A helpful source of information for people affected by sleep apnea, including pages on being evaluated, personal stories, and support group information.
The Endocrine Society
For endocrinologists; recommended if you are already very familiar with acromegaly and endocrinology. Links to symposia discussions, professional education, and press releases on the latest research findings.
EndocrineWeb.com
Basic information for patients with endocrine disorders, written by physicians, but little information about acromegaly specifically.
The Pituitary Tumor Center of Massachusetts General Hospital
Affiliated with Harvard Medical School, this site provides physician-level information on acromegaly diagnosis, treatment, and research.
Society for Endocrinology
For endocrinologists: Recommended if you are already very familiar with acromegaly and endocrinology.
Acromegaly Support Groups
Joining an acromegaly support group can help you deal with acromegaly and interact with people who are going through similar experiences. Support groups share the latest treatment information, personal stories, and ways to get support for overcoming a disease. If you are interested in joining an acromegaly support group, a list of groups and their websites is provided below. Although Internet addresses change from time to time, current acromegaly sites include:
The Pituitary Network Association (PNA)
The Pituitary Network Association (PNA) is an international nonprofit organization for patients with pituitary tumors and disorders, their families, loved ones, and the physicians and health care providers who treat them.
www.pituitary.org or call 805-499-9973UCLA Pituitary Patient Support Group
Sponsored by the UCLA Pituitary Tumor and Neuroendocrine Program, this free support group offers bimonthly meetings hosted by medical professionals and volunteers whose mission is to provide current information about pituitary health, as well as emotional guidance and support.
