Adrenocortical Carcinoma affects one person per million each year.


Currently there is no cure other than surgery when viable














Adrenal Cortical Cancer 

also known as Adrenocortical Carcinoma (ACC) is cancer of the adrenal gland, specifically the outer layer of the adrenal gland called the adrenal cortex.

The Cortex of the Adrenal Glands are responsible for handling stress on the body by releasing hormones, specifically  cortisol.

ACC is considered an Ultra Rare Cancer affecting as few as 1 person per million. ACC may or may not produce any symptoms depending on whether or not the adrenal gland is producing hormones in excess.  

Signs may include "Cushings Syndrome" symptoms or "Addisons Disease" or "Conns Syndrome" type symptoms.

ACC can occur at any age but is usually found incidentally if not causing any symptoms in the 4th and 5th generation of life or if producing symptoms, resulting in early onset puberty, most easily recognized in children younger than 5 years old, making it easier to diagnose.

Currently there is no cure for Adrenocortical
Carcinoma. The only curative treatment is surgery

which is why an experienced ACC Surgeon, Hospital

and Center of Excellence, with an experienced

ACC team are the best line of defense.


See our Links page for more information


In the USA the Rare Disease Act of 2002 defines rare disease strictly according to prevalence, as "any disease or condition that affects less than 200,000 persons in the United States," or about 1 in 1,500 people.
There are approximately 7000 such rare disease's 
affecting approximately 25 million people in the United States currently.

 An ultra rare or 'orphan disease' can affect fewer than 40,000 people.


Rare and Ultra Rare Cancers are also known as Orphan Diseases.

A rare disease /orphan disease, 

is any disease that is not common.
ACC is an Ultra Rare Cancer and is considered an  Orphan Disease






An ultra 
rare or 'orphan disease' such as ACC affects approximately one in a million 

which is approximately 300 to 500 people per year in

Canada and the United States combined. 

Orphan Disease


Orphan Diseases are called such due to the lack of dedicated funding for research.

Orphan disease is a disease that is so rare that

it is not considered commercially viable

to develop drugs to treat.


 A disease which has not been "adopted" by the pharmaceutical industry because it provides little financial incentive for the private sector to make and market new medications to treat or prevent it.



The United States' Orphan Drug Act

The United States' Orphan Drug Act includes both rare diseases and any non-rare diseases "for which there is no reasonable expectation that the cost of developing and making available in the United States a drug for such disease or condition will [be] recovered from sales in the United States of such drug" as orphan diseases. An orphan disease, is any disease that affects a small percentage of the population."


Adrenal Cortical Carcinoma is an uncommon cancer 

and considered an ultra rare-orphan disease 

and accounts for approximately 0.6-1.67

cases per million per year. 


1 person is diagnosed with cancer every

 couple of seconds. 

1 in 3 people will be affected with cancer in

 their lifetime 

1 in 4 deaths in the U.S. are from cancer

There will be over one and a half million new cancers diagnosed in the United States this year (2012) according to the American Cancer Society.

Cancer will kill about 10% of the population of The United States this year.

The current estimated human population for the planet earth in 2010 is 6,865,300,000 by the United States Census Bureau. 

The United Nations estimates that world population will be over the 7,000,000,000 mark in 2012-2013. 

Recent U.N. organized surveys performed in multiple countries have found the average percentage of people who suffer from some sort of cancer is 31%

The American Cancer Society has found similar numbers in its studies of North and South America.
Using these two sources of information. One can estimate that 2,128,243,000 individuals in the year 2012-2013, will have some form of cancer.

Currant Cancer Statistics

Cancer is the second leading cause of death in the United States.

 Heart disease is first.

Cancer affects people at all ages. 

One person is diagnosed with cancer every couple of seconds.

 One in two men and one in three women will get cancer in their lifetime.

 One in four people in the U.S.will die from cancer. 

 Cancer is the second leading cause of death, preceded only by heart disease.

Half a million people will lose their lives to it this year.

Cancer Worldwide

Cancer is a leading cause of death worldwide.

One in eight in the world will die from cancer.

Cancer accounted for over 7.9 million deaths in 2007, about 13% of the human population. 

 12.7 million new cancer cases were diagnosed in 2008 worldwide.

The world population is over 6 billion.

WHO (World Health Organization) says that cancer accounted for approximately 7.9 million deaths in 2007

(about 13% of all deaths combined)

The World Health Organization projects that cancer will become the world's leading cause of death this year, followed by heart disease and stroke.

Rare Cancer

Currently there are over 7000 types of rare disease.

A disease is considered rare if it affects fewer than 200,000 people

About 25 million people in the U.S. have one.

In the US, Rare Cancer is defined as a condition that affects less than 200,000 people annually.

Using this figure about 95% of all cancers are considered rare.


The 200,000 figure was legislated through the Rare Disease Act of 2002

-using the Act's definition would make almost all cancers rare, since more than 95% of all cancers affect fewer than 200,000 people.


 Federal Government defines rare Cancer as those with fewer than 40,000 cases a year in the United States


"Focusing on the 40,000 patient threshold, though, would still mean that 80% of all cancers would be considered rare"


By this definition, every cancer is rare except for breast, lung and colon cancers.

A majority of those rare cancers are even more uncommon or ultra rare 

affecting 40,000 people or less per year.

Ultra Rare Cancer

Of the most uncommon cancers 

known as "Extremely Rare" 

 or ‘Ultra Rare Cancers, 

many have a dismal mortality rate due solely to a lack of funding for research.

 Adrenal Cortical Carcinoma affects approximately One in a Million 

There are even rarer cancers affecting  fewer than one in a million. 

Currant Cancer Funding

The dollar amount funded for cancer research last year was over 4.8 billion,

Next year it will be over 5.1 million

Government funding for cancer research is dedicated to the top 10 to 20 most common cancers.

There are over 200 different types of cancer.

Over 80% of all combined cancers 

are rare and ultra rare.

Future Cancer Cancer Statistics

Deaths from cancer worldwide are projected to continue rising, with an estimate of over 12 million deaths in 2030

A recent study predicted that if more progress against the disease of cancer is not forth coming, the number of cancer cases in the United States could reach 2.3 million by the year 2030, a 45 percent increase from the 1.6 million estimated new cases predicted in 2010.

Projections are that there will be almost 21.4 million new cases of cancer diagnosed worldwide annually come 2030 with over 13.2 million cases resulting in death from cancer.

Ultra Rare Cancers and Orphan Diseases

Of the one and a half million new cancer cases diagnosed this year approximately one third will be common one third will be rare and approximately one third will be diagnosed as ultra rare cancers.

That equates to approximately 1500 new cancers diagnosed per day. 
This will mean that 500 people, a man, a women, a child, 
a husband, a wife, a parent, a neighbor, a cousin, a friend
will receive an ultra rare cancer diagnosis 

and will be told 
there is no cure or proven 
treatment currently available specific to your type of cancer due to a lack of resources and funding for research.

 There is limited funding DEDICATED yearly for many ultra rare cancers considered orphan disease.

 There are approximately 300 new cases of Adrenal Cortical Cancer diagnosed each year in the United States. 

That means approximately one person in a  million will be diagnosed with Adrenal Cortical Cancer this year 

for which there is no cure or proven treatment dedicated specifically to curing ACC.


2% of all cancers diagnosed in the United States occur in children 

Childhood cancer is the second-most common cause of death in children older than one year, with accidents being the first.

Childhood cancer is often more aggressive than adult cancers. Thus, surgery alone is less likely to cure a child.

 About 8,700 cases of cancer are diagnosed in children under the age of 15 years in the United States each year. Another 2,000-3,000 are diagnosed in teenagers over 15 years of age.

Researchers estimate that 1 of every 333 children will be diagnosed with cancer

 before the age of 20 years.

For parents, the day they learn that no further treatment is available is even harder than the day they learned their child's diagnosis.

Hearing a cancer diagnosis is devastating enough, 

but to be told that there is no cure or that currently there is

no treatment available is unacceptable!


Thanks to funding for Cancer research, survival rates have improved  overall 18% from the 1970’s to today.

In the 70’s the overall survival rate for a cancer diagnosis was about 50%.

Today it is about 68% overall

Unfortunately these statistics do not necessarily apply to Ultra Rare Cancers

Funding for research is desperately needed for ultra rare cancers that currently have no cure.

We need new legislation for Ultra Rare Cancers otherwise known as Orphan Diseases;

The lives of vast numbers of Americans have been touched by the disease. In 2008, over 1.4 million Americans were diagnosed with some form of cancer, and more than half a million lost their lives to the disease.”Senator Kennedy says, “In sum, we need a new model for research, prevention and treatment of cancer, and we are here today to start that debate in Congress.”

Regarding the 2009 Rare Cancer Section of the Bill Titled- ‘The Alert Act’- House Version of the Bill-HR6-224

 See the Rare Cancer Alert Act on the Advocacy page for more information