“You are THE ONE person, in over a million per year, with Adrenal Cancer, this orphan disease”: every patient, dealing with ACC (the medical term being Adrenocortical Carcinoma), has heard these words at least once!
ACC is a rare cancer. The first words you read when doing any research, are not very reassuring, the most recurring being would be” rare”, “aggressive” with “poor prognosis”.
That being said, it does not mean we have to stand on the sidelines and watch passively the disease takes hold, evolves or worsens. Whatever the state of your disease, you need to fight and if you want to talk and share, this website is here to give you the tools you need. We don’t have all the answers and aren’t a substitute for your doctors, but we can help you ask yourself some questions and more importantly give you the information to become your own advocate!
Some of us are almost the only case in our own country, so we need to create an international network in order to find more information and support. The lack of information and experts on the subject creates much more anxiety than it should, leaving a lot of questions open about your care, your future, your quality of life, your outcome or how to deal with the diagnosis (in the short or long term). This is why we have created this association, so you can reach out and find people in the same situation with the exact same questions. We want you to know that you are not alone and that you, too, can have a support group.
Please, remember that we are not doctors and will only try to offer you relevant information and data.
Seek the advice of your physician or other qualified health provider regarding your health and condition.
Also, from one country to another, medical experts do not handle treatments the same way, so please always refer to a medical expert (some are listed in the members part of the website (see address book) with all details to contact them).
Let’s Cure ACC has just been created. We are waiting to get more experts listed in the future, pending for their approval.
Please, do not hesitate if you want to share privately with us through our form the name and contact of your own doctor so to create the best contact list possible. We will get in touch with them to ask if they want to be listed.
What remains a constant wherever you live is the type of questions you should ask, including what can be provided to you and what you are entitled to, such as psychological support and financial aid. This website is here to help you be as informed as possible on these topics so that you can be your own advocate (the best version of you that you can be!).