When my Pop-pop was first diagnosed with Pancreatic Cancer, my family searched high and low for any information we could find on the disease. We scoured every source we had for the names of doctors and hospitals who specialize in treatment of Pancreatic Cancer, for clinical trials, and any other patient services we could find.

We’ve compiled this “Resources” page so that other families affected by Pancreatic Cancer can get all their information in one place! Scroll down for our growing list of places to find treatment options, patient resources, and other information.  And if you know of a valuable resource we should include, click here and tell me about it so I can add it to the list.

Major Foundations & Medical Institutions

National Cancer Institute at the National Institute of Health (NIH)

The National Cancer institute at NIH is an excellent resource. Among other things, you will have access to a comprehensive cancer information database called the Physician Data Query (PDQ). The PDQ database contains summaries of the latest published information on cancer prevention, detection, genetics, treatment, supportive care, and complementary and alternative medicine. Most summaries come in two versions. The first version is written in technical language containing detailed information geared toward health professionals. The second is a patient-oriented versions written in easy-to-understand, nontechnical language. Both versions have cancer information that is accurate and up to date and most versions are also available in Spanish. The information available here can prove exceptionally helping in understanding treatment options and communicating to your caregivers about this complicated disease.

PDQ is a service of the NCI. The NCI is part of the National Institutes of Health (NIH). NIH is the federal government’s center of biomedical research. The PDQ summaries are based on an independent review of the medical literature. They are not policy statements of the NCI or the NIH.

National Cancer Institute Pancreatic Cancer Home Page

Pancreatic Physician Data Query (PDQ)

Pancreatic Cancer Action Network (PANCAN)

The Pancreatic Cancer Action Network is a patient-based advocacy group that works to focus national attention on the need to find a cure for pancreatic cancer. Find tons of resources and additional information about the disease and how to fight it. PANCAN organizes PurpleStride events on dozens of cities across the country and has been a wonderful resource for my family.  Visit PANCAN’s “Patient Central” at:

Pancreatic Cancer Action Network (PANCAN) Patient Central

The Sol Goldman Pancreatic Cancer Research Center at Johns Hopkins

The Multidisciplinary Pancreatic Cancer Team at Johns Hopkins is committed to providing the highest level of care to individuals suffering from pancreatic cancer and related conditions. Their team is comprised of many of the world’s leading experts in pancreatic cancer.

The Sol Goldman Pancreatic Cancer Research Center at Johns Hopkins

The Lustgarten Foundation

To advance the scientific and medical research related to the diagnosis, treatment, cure and prevention of pancreatic cancer by increasing funding and support of research into the biological mechanisms and clinical strategies related to the prevention, diagnosis, and treatment of pancreatic cancer; facilitating and enhancing the dialogue among members of the medical and scientific communities about basic and clinical research efforts that relate to pancreatic cancer; and heightening public awareness of pancreatic cancer diagnosis, treatment, and prevention and providing informational support for pancreatic cancer patients, their families, and friends.

The Lustgarten Foundation

Hirshberg Foundation for Pancreatic Cancer Research

The Hirshberg Foundation for Pancreatic Cancer Research is dedicated to advancing pancreatic cancer research, as well as providing information, resources, and support to pancreatic cancer patients and their families.

Hirshberg Foundation for Pancreatic Cancer Research

American Cancer Society – Pancreatic Cancer Home Page

To advance the scientific and medical research related to the diagnosis, treatment, cure and prevention of pancreatic cancer by increasing funding and support of research into the biological mechanisms and clinical strategies related to the prevention, diagnosis, and treatment of pancreatic cancer; facilitating and enhancing the dialogue among members of the medical and scientific communities about basic and clinical research efforts that relate to pancreatic cancer; and heightening public awareness of pancreatic cancer diagnosis, treatment, and prevention and providing informational support for pancreatic cancer patients, their families, and friends.

American Cancer Society – Pancreatic Cancer Home Page

American Pancreatic Association

The American Pancreatic Association is an organization for physicians and researchers interested in diseases of the exocrine pancreas. Their mission is to foster clinical and basic science research needed to cure diseases of the pancreas.

http://www.american-pancreatic-association.org

Emotional & Clinical Resources

PANCAN Patient Central: Patient Call Center

Schedule calls at any time with professionally trained associates who can help patients and their families learn more about Pancreatic Cancer and provide suggestions as to how to proceed following diagnosis or at any point in a patient’s journey.

Patient Call Center

PANCAN Patient Central: Patient Registry

Use this completely confidential patient information database not only to record one’s own experience and information and ensure easy access to doctors, but also to use one’s experience to contribute to research/medical communities.

Patient Registry

PANCAN Patient Central: Know Your Tumor

PANCAN’s one-of-a-kind service that allows patients to get their tumor tested for free. By studying the molecular profile of a tumor, patients can work with their doctors to use the practice of “personalized medicine” to find the treatments and clinical trials that will work best.

Know Your Tumor

PANCAN Patient Central: Survivor/Caregiver Network

After contacting the call center, request to speak with a survivor or a caregiver to ask questions and express concerns to people that have truly been in the position of an affected family/patient. If you are a caregiver/survivor, you can register to volunteer at the call center at this page as well.

PANCAN Patient Central: Survivor/Caregiver Network

PANCAN Patient Central: Support Groups

Use this page to find support groups and share your story with others that truly understand the experience of being affected by Pancreatic Cancer.

PANCAN Patient Central: Support Groups

Clinical Trials

PANCAN: Clinical Trial Finder

Learn about the pros and cons of participating in clinical trials and receive a free Treatment Information Packet to help affected families plan for treatment after diagnosis.

PANCAN Clinical Trial Finder