Online Resources
Endocrine Support Organizations
American Academy of Clinical Endocrinology
This is a general endocrinology group with about 3,000 members
Pituitary Society
This group focuses on improving the health of patients with pituitary issues including educational programs for patients, family, med students, scientists, and doctors. They develop programs to study the biology of pituitary issues.
Endocrine Society
Founded in 1916 and is the oldest and largest endocrine group in the country. These people are very active. They are devoted to research on hormones and clinical practice. They are searching for greater understanding of endocrinology among the general public and medical doctors.
MAGIC Foundation for Children's Growth
MAGIC Foundation is the global leader in endocrine health, advocacy, education, and support. Children fail to grow for a variety of reasons. Hormones, genetics, sleep, nutrition, general health and exercise are all factors for normal growth. If you suspect that your child is not growing normally, you are in the right place!
Acromegaly Education
https://www.acromegaly.care/ (Sponsored by Chiasma)
Have more proactive conversations with your acromegaly care team
Acromegaly can affect your body in many ways. You may feel tired, sweat a lot, or have changes to your hands and jaw. Acromegaly can also affect your heart, eyes, and even your mental health. These effects can change over time, even if you have had surgery or are taking medicine to control your acromegaly.
It’s important to stay connected to your care team. Let them know about any new or worsening symptoms, including “breakthrough” symptoms that get worse a few weeks after receiving long-acting injections. You’re more than numbers on a page. It’s important to speak up and share all the ways that acromegaly is affecting you. That information can help your doctor know if it’s time to start medical treatment and which one may be right for you.
Pituitary Tumors Watch Videos- Patient Support Group Meetings. Click here for nine excellent videos dealing with hormonal health!
www.acromegalyanswersblog.com Ipsen (Somatuline)
www.acromegalyanswerswebinar.com Ipsen (Somatuline)
http://www.somavert.com/ Pfizer (Somavert)
Pituitary Disease Education
www.pituitarydisorders.net
This group studies general pituitary gland function and diseases including: prolactinoma, Cushing’s Disease, and acromegaly. They also look at treatment options, hormone deficiency, patient stories, and clinical trials
AcromegalySupport.org
This is an outreach program run through Cedars Sinai
This is the Hormone Foundation. It focuses on general pituitary tumors and acromegaly in a more general sense as a pituitary disorder
AcromegalyInfo.com
This is a layperson's site for Acromegaly on understanding, living with, and treating Acromegaly.
NORD (National Organization for Rare Diseases)
Specializes in "orphan" diseases and research.
Hormone Foundation
14,000 members. Specializes in prevention, treatment, and curing of hormone-related diseases
Additional online resources
The most famous modern-day patient with Acromegaly. A great person surrounded by a wonderful and loving family
Bringing state-of-the-art and up-to-date information pertaining to health related matters of importance to those with pituitary tumors and other related disease processes.
Brain Tumor Center at St. John's Health Center, John Wayne Cancer Institute
Pituitary Tumors Watch Videos- Patient Support Group Meetings. Click here for nine excellent videos dealing with hormonal health!
http://acromegalybloggers.blogspot.com/
Blogging from people living with Acromegaly
http://blessed-beyondmeasure.blogspot.com
Blogging and support for people dealing with pituitary tumors
Dedicated to those touched by hormonal
Primarily a cancer-based group, but a great group with a solid message.
Online support groups for your health challenges
Online support groups and forums
Website dedicated to medical issues that may be difficult to diagnose