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About Rare Diseases

A Guide to Rare/Orphan Diseases, edited by the Pediatrician Mary Kugler, with a special section on rare cancers.

Acinic Cell Carcinoma Information Center

This website has been developed by Edgar Stroke, a cancer patient who has been dealing with acinic cell carcinoma since the early 1980s. It is a non-profit organization with no affiliations with any medical institutions, pharmaceutical companies, or any other organizations or businesses. Its only interest is in helping to provide information to treat acinic cell carcinoma patients worldwide, and ultimately to rid the world of this disease.

American Association for Cancer Research (U.S.A.)

A scientific society of over 17,000 laboratory and clinical cancer researchers, founded in 1907 to facilitate communication and dissemination of knowledge among scientists and others dedicated to the cancer problem.

American Cancer Society (U.S.A.)

A nationwide, community-based voluntary health organization founded in 1913. Headquartered in Atlanta, Georgia, the Society has state divisions and more than 3,400 local offices.

American Psychosocial Oncology Society (APOS)

The mission of the Society (formerly know as American Society for Psychosocial and Behavioral Oncology/AIDS) is to promote the psychological, social, and physical well being of patients with cancer and their families at all stages of disease and survivorship through clinical care, education, research, and advocacy.

ASCO - American Society of Clinical Oncology (U.S.A.)

As a non-profit organization, ASCO is dedicated to achieving its charitable mission outlined by the organizationís founders in 1964. ASCO strongly supports all types of cancer research, but in particular, patient-oriented clinical research.

Cancer Genome Anatomy Project (U.S.A.)

An interdisciplinary program established in 1996 and administered by the National Cancer Institute to generate the information and technological tools needed to decipher the molecular anatomy of the cancer cell.

Cancerfacts.com (U.S.A.)

This online resource for cancer patients, their families, and caregivers is dedicated to delivering accurate and personalized information at a time of need.

CancerIndex (U.K.)

An annotated directory of several thousands links to web sites dealing with cancer worldwide.

Cancerlinks (U.S.A.)

A website specially designed to make searching the Web for information about cancer faster and easier. Each special topic contains links providing comprehensive information about cancer, its effects and treatment.

CancerNet (U.S.A.)

Purpose of this site is to provide recent and accurate cancer information from the National Cancer Institute, the U.S. Federal Governmentís principal agency for cancer research.

Cancer-Pain.org (U.S.A.)

Connect to the latest and most accurate information on state-of-the-art management of cancer pain for patients, caregivers and healthcare professionals.

CancerTrials (U.S.A.)

The site provides information and news about cancer research studies. It is run by the National Cancer Institute, part of the National Institutes of Health of the United States Department of Health and Human Services.

Centerwatch Clinical Trials Listing Service (U.S.A.)

This site contains a wealth of information related to clinical trials, such as a listing of more than 41,000 industry- and government-sponsored clinical trials as well as new drug therapies recently approved by the FDA.

Collaboration, Education, and Test Translation (CETT) Program for Rare Genetic Diseases

At the request of the U.S. Congressional House Appropriations Committee to address the development of diagnostic tests for rare diseases, the Office of Rare Diseases (ORD) established this pilot program to promote new genetic test development and better understanding of each rare disease.

DIPEx (U.K.)

The world's first Database of Individual Patient Experiences. So far, only the prostate cancer module is ready for browsing.

Drug Infonet (U.S.A.)

Official Package Insert information on pharmaceuticals for both health professionals and consumers, available by brand name, generic name, manufacturer and therapeutic class. This information is provided by pharmaceutical manufacturers.

FDA Oncology Tools (U.S.A.)

Contains a variety of information related to cancer and approved cancer drug therapies.

Leiomyosarcoma (U.S.A.)

The purposes of this site, created and managed by leiomyosarcoma patients and spouses, are: to give information about leiomyosarcoma, to describe what the treatment options are, to help you make decisions concerning care, to give support and encouragement in the fight against leiomyosarcoma.

Mesothelioma Center (Asbestos.com)

We provide vital services and free resources for patients and families affected by mesothelioma.

National Cancer Institute

As the nation's leading federal agency for cancer research, NCI has 30 divisions, offices, and centers who work together to build, maintain, and enhance a cohesive and comprehensive cancer research agenda. Their work ranges from cutting-edge research on cancer causes, treatment, and prevention; to training the next generation of cancer researchers; to funding and supporting the nation's vast network of scientists and cancer research institutions; to informing and educating the American public and the world about cancer.

National Cancer Institute of Canada Clinical Trials Group (Canada)

It is a cooperative oncology group which carries out clinical trials in cancer therapy and supportive care across Canada and internationally.

National Foundation for Cancer Research (U.S.A.)

Founded in 1973 by a philanthropic entrepreneur, the Foundation generously funds research against cancer.

NORD - National Organization for Rare Disorders (U.S.A.)

A unique federation of more than 140 not-for-profit voluntary health organizations serving people with rare disorders and disabilities. NORD is a charity and continues its mission through the kindness and generosity of its donors.

Office of Rare Diseases, National Institutes of Health

Informations on more than 6,000 rare diseases, including current research, publications from scientific and medical journals, completed research, ongoing studies, and patient support groups.

OMIM - Online Mendelian Inheritance in Man (U.S.A.)

A catalog of human genes and genetic disorders authored and edited by Dr. Victor A. McKusick and his colleagues at Johns Hopkins and elsewhere, and developed for the World Wide Web by the National Center for Biotechnology Information.

OOPD - Office of Orphan Products Development (U.S.A.)

Located in the Office of the Commissioner, Food and Drug Administration (FDA), the Office administers the orphan products development program, essentially involved in the identification of orphan products and the facilitation of their development.

Orphan Europe (Francia)

It is a pharmaceutical company established in Paris, France 1990, with the objective of providing orphan drugs to patients afflicted by rare disorders.

ORPHAnet (Francia)

It is a relational database on rare diseases and orphan drugs which is designed to serve the Community at large to improve the diagnosis, care and treatment of rare diseases and boost research activities in the field.

People Living With Cancer (U.S.A.)

This patient information website is run by the American Society of Clinical Oncology (ASCO), and it is designed to help patients and families make informed health-care decisions. The site provides information on more than 85 types of cancer, clinical trials, coping, side effects, a Find an Oncologist database, patient support organizations, and more ...

Quackwatch (U.S.A.)

A member of Consumer Federation of America, is a nonprofit corporation founded in 1969 whose purpose is to combat health-related frauds, myths, fads, and fallacies.

Rare Cancer Alliance (U.S.A.)

A website created by an alliance of cancer patients and advocates to help patients who are diagnosed with rare cancers, from around the world.

Sarcoma.net (U.S.A.)

Created by Dr. Demetri, Medical Director of the Center for Sarcoma and Bone Oncology at the Dana-Farber Cancer Institute. The Center includes several other specialists with dedicated interest and expertise in the management of patients with sarcomas.

The Association of Cancer Online Resources -ACOR (U.S.A.)

A charitable organization, dedicated to providing information and support to cancer patients and those who care for them through Internet mailing lists and Web based resources.

The Institute of Cancer Research (U.K.)

Founded in 1909, the Institute is one of the world's leading cancer research organisations and is internationally renowned for the quality of its science. Its mission is the relief of human suffering by pursuing excellence in the fight against cancer.

The Sarcoma Alliance (U.S.A.)

A nonprofit organization founded in 1999 by a survivor of synovial sarcoma. Its mission is to guide, educate and support adults with sarcomas and their family, friends, and caregivers.

The Sarcoma Foundation of America (U.S.A.)

Founded in June 2001, declared its war on sarcoma in July 2001.

Types of cancer - Cancer Information - Macmillan Cancer Support

Itís important for doctors to know what type of cancer a person has because different types of cancer can behave very differently and respond to different treatments.

Types of Cancers and Cancer Treatments

Cancer is a broad term for a group of disorders, describing an abnormal cell growth, and encompasses a number of malignant diseases

UKCCCR Register of Cancer Trials (U.K.)

This site is designed to provide access to the UKCCCR Register, which contains information concerning Clinical Trials in cancer. It also includes some general information and some background to clinical trials.

VMOTG - Victorian Medical Oncology Trainees Group (Australia)

A group comprising all medical oncology trainees in Victoria founded in 1999 and funded by sponsorship from the pharmaceutical industry. Its chief aim is to increase the education of its members.

Y-ME National Breast Cancer Organization (U.S.A.)

The US's premier resource for breast cancer information and support. Founded in 1978, it has matured from a kitchen table support group of 12 women to a national organization with affiliate partners in 27 cities throughout the States.