Support and resources
For most patients, acromegaly is a life-changing disease, even when it is well managed. It can cause noticeable changes to the person’s appearance and internal state. Many patients live with the disease for years before it is diagnosed.
Accepting these changes and balancing the ‘old’ self with the ‘new’ self can be challenging. However, there is help available if you reach out. Whatever your challenges, concerns or questions, it’s important to remember that you are never alone.
Patients and caretakers can find support through national meetings with doctors, nurses, and other patients, as well as through patient associations, online discussion groups, small local meetings, and national and international websites.
Find Support
Internationally:
Visit the World Alliance of Pituitary Organizations (WAPO) website to learn more about acromegaly and find your local support group: www.wapo.org
In Denmark:
Hypofyse.dk is the patient organisation for all pituitary gland diseases.
The Danish acromegaly Facebook group is called “Dansk akromegali fællesskab”
In Germany:
Glandula is the network for pituitary and adrenal diseases.
In Norway:
HYBI is the national non-profit pituitary and adrenal association.