Alternate Support Communities
Scroll to the bottom of the page to view media coverage of Acromegaly Community members
Featured parts of AcromegalyCommunity.com
http://www.facebook.com/acromegaly
http://www.twitter.com/AcroCommunity
http://groups.myspace.com/acromegalysupport
Groups we associate with (please support)
www.brain-tumor.org John Wayne Cancer Institute
www.hormones411.org Privately owned blog for people with hormone-related medical issues
http://acromegalybloggers.blogspot.com/ Blogging from people living with Acromegaly
http://blessed-beyondmeasure.blogspot.com/ Blogging and support for people dealing with pituitary tumors
http://magicfoundation.org Organization dedicated to those touched by hormonal disorders. Provides information and support.
www.acromegalyanswersblog.com Ipsen
www.acromegalyanswerswebinar.com Ipsen
mAss Kickers:
Primarily a cancer-based group, but a great group with a solid message.
Great video created by a mAss Kicking member!MD Junction
Clinical Trials
Clinical Trials.org: Check this website to find out about medical trials in progress
http://www.mdanderson.org/patients_public/clinical_trials/: This site focuses mostly on cancer research.
ClinicalTrials.gov:
Check this website to find out about medical trials. Very User-friendly, and has a category specifically dedicated to acromegaly.
If you have symptoms your doctor is struggling to diagnose, this might be a site you want to check out
Pituitary Disease Education and support:
www.pituitarydisorders.net:
This group studies general pituitary gland function and diseases including: prolactinoma, Cushings Disease, and acromegaly. They also look at treatment options, hormone deficiency, patient stories, and clinical trials
This is an outreach program run through Cedars Sinai
Hormone.org: This is the Hormone Foundation. It focuses on general pituitary tumors and acromegaly in a more general sense as a pituitary disorder
This is a layperson's site for acro on understanding, living with, and treating acro.
Alternative Support Groups in person or online
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
Medical 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.
Acromegaly Community's Media Attention
If you click on the headlines above the articles, you will be brought to the text of the article. You need to be a member of Acromegaly Community to see articles in the News.
February 25, 2010
Be supportive of people living with rare disease
Today honors those with rare diseases, including Prescott Valley's Sheryl Colstock
If you are in the media and would like to interview a member of Acromegaly Community, please email wayne@acromegalycommunity.com. Please tell us the name of your outlet, the form of the medium (tv, newspaper, magazine, radio, etc.), and what information you are looking to learn (any patient with acromegaly, dealing with rare diseases, men or women struggling with pituitary issues, etc.)
Thank you.
Randy Pausch Last Lecture
Sadly, there are very few acro-intensive support groups. We end up either piggybacking on cancer or endocrine groups. We don't really fit in either. It is for this reason that WE ARE THE TRAILBLAZERS OF THE FUTURE! Be proud of what we are all accomplishing.The following video is the very famous Last Lecture from Professor Randy Pausch. If you have never seen this discussion, please watch and be inspired. If you have enjoyed the Last Lecture before, please take the time to view it again and be reinspired.
While Acromegaly can occasionally impact our emotions, we all have the ability to figure out how to climb back on top of the blues. Randy Pausch's realistic view on life, its challenges, and its gifts serves as a reminder of what is most important in our own lives and the need to always be striving to realize our own dreams.
Remember, as Randy says, "we cannot change the cards we are dealt, just how we play the hand."
