Researchers Receive NCI Award to Study

Phyllis…thank you so very much for sharing your personal journey. It is beneficial to many and will continue to be a resource to others.
You are bringing up some valuable points. For many of those mentioned by you and other reasons The Cholangiocarcinoma Foundation was founded. You may read the below link:
http://www.cholangiocarcinoma.org/history.htm

According to the National Institute of Health (NIH) approximately 7.000 rare diseases affect nearly 30 million or 1 in 10 people Americans. Cholangiocarcinoma is estimated to occur at the rate of 2 persons per 100.000 of all cancer patients. Low occurrence rate coupled with non existent detection methods and silent disease progression followed by difficulty of translating symptoms to disease combined greatly contribute to late stage diagnoses of this cancer.
Although, we are experiencing research acceleration, in contrast to major cancers monies dedicated to rare cancer continues to be dismal.
Within the last 3 years however, we have seen some positive changes. This cancer has reached some notoriety and is experiencing a greater surge of interest worldwide.

The Cholangiocarcinoma Foundation supports this interest by attending medical conferences with focus on biliary cancer and by the means of other endeavors.
We would like to see bile duct cancer educational brochures (ours and those from others) located in each office and medical center world wide. We appreciate anyone, patients and caregivers, friends, relatives, and acquaintances to support our efforts by becoming involved in this endeavor. Gladly, we will mail to you a requested amount of pamphlets.

This site is unique in that the members have established an outlet for those touched by this cancer via the discussion board for those touched by this disease. And, for many it provides education, support, and guidance not found anywhere else. Are our discussions scientifically validated? Absolutely not; nevertheless wisdom and compassion is shared freely and enthusiastically and in most instances it contributes to understanding of this disease for patients and caregivers alike.
As in your case, Phillis, information should have been readily available.
We are working hard on bringing changes about and we will continue to do so.
All my best wishes,
Marion

pljc….Your point is well taken. More research for orphan cancers is warranted but, it has been addressed in some instances.
Although, Orphan drugs generally must undergo the regulatory development path as any pharmaceutical product it can however, be fast tracked. Dosing, pharmacokinetics and pharmacodynamics, efficacy, stability, and safety required for all.
Additionally, the government offers to pharmaceutical companies tax incentives, enhanced patent protection, marketing rights and, clinical research financial subsidization.
At times it is the government engaging in research and development.

Then, we wonder, why do we not see more research for our cancer? The answers are multifold some, of which I like to address:
Accruals for clinical trials present to be difficult as the patient population is limited.
The cancers affecting large population groups guarantee huge profits to the pharmaceutical companies not something to be expected with an orphan cancer.
Genes expressed in one cancer may reveal to be similar to another causing a trickle effect of large scale research of a major cancer to another, lesser known cancer.
In fact, I believe for the majority of approved cancer drugs are used