For the present I will simply list those websites and support groups that come to my attention, as time constraints have prevented me from searching for sources of information and support specific to rare cancers. If you know of any internet resources for a rare cancer, please let me know by email at everest@bestcancersites.com and I'll add the resource to this list.

NORD - the National Organisation for Rare Disorders - has a database of rare disorders on their website including many rare cancers. The database gives a list of alternative names for each disorder, some basic information about the disorder, and a list of organisations related to that disorder.

Here's how to find out if the rare cancer you are involved with is listed in their database. Go to their home page at www.rarediseases.org, and find and click on the link 'Index of Rare Diseases'. This will take you to a section where all rare diseases in their database are listed in alphabetical order. If the name of the cancer you are looking for is on the list, click on the name for more information.

Alternatively, on their home page click on the link 'Rare Disease Database' and then use the search facility on the new page that displays to look for the cancer.

If you are involved with a website or support group for a particular rare cancer and it's not listed in the NORD database, you may be able to get it listed there. I was not able to find a form on their website specifically for that purpose - if you can't find one perhaps simply send them an email at the general contact address they give with details of your website or organisation or group.

The website of the National Cancer Institute (USA) at www.cancer.gov has authoritative and easy to read and understand information on numerous types of cancer. If you go to their home page and click on the link "A to Z List of Cancers" (under the heading "All Cancer Types") you may find the cancer type you are looking for in the alphabetical list. You could also try putting the name of the cancer into the search window on the home page. That may find some information about the rare cancer in documents on more common cancers.

The American Cancer Society, a voluntary organisation, runs one of the most comprehensive websites on cancer and cancer-related matters on the net. Their address is www.cancer.org. They have information on many types of cancer. On their home page, click on the link "Choose a cancer topic" and search for the relevant cancer in the alphabetical list that displays. They have many other resources too for those involved with cancer so it's well worth browsing their site for additional information and support that may be relevant to your situation.

A good source of information about cancers and related matters is Medlineplus at www.medlineplus.gov. It's a service of the U.S. National Library of Medicine and the National Institute of Health and it’s a big well-organised and easily searchable site. The link to the section on cancers is www.nlm.nih.gov/medlineplus/cancers.html and there's an index to contents on that page where you may find topics relevant to your search.

Here’s some background from their home page:
Medlineplus - “A service of the U.S. National Library of Medicine and the National Institute of Health”
“Welcome to MedlinePlus, a goldmine of good health information from the world's largest medical library, the National Library of Medicine. Health professionals and consumers alike can depend on it for information that is authoritative and up to date. MedlinePlus has extensive information from the National Institutes of Health and other trusted sources on over 650 diseases and conditions. There are also lists of hospitals and physicians, a medical encyclopedia and a medical dictionary, health information in Spanish, extensive information on prescription and nonprescription drugs, health information from the media, and links to thousands of clinical trials."

The Rare Cancer Alliance website at www.rare-cancer.org provides information about some rare cancers and has some on-site forums and Yahoo email support groups. For some reason they don't give links to rare cancer websites or to rare cancer support groups other than their own.

Acinic / Acinar / Acinous Cell Carcinoma
For information about this rare cancer, I suggest going to the website Acinic Cell Carcinoma Information Centre at www.aciniccell.org. They say "This website has been developed by Edgar Stroke, a cancer patient who has been dealing with acinic cell carcinoma since the early 1980s. During that time he has had many experiences, both negative and positive, in dealing with the disease. He has also had an extremely unusual (and rare) large metastasis, which prompted him to begin serious research on this disease in 1993. Since then, Edgar has been researching the disease and treatment options, as well as experimenting with various treatments on himself. He has undergone numerous and various procedures over many years. Through these experiences, Edgar has also learned a great deal about the logistics of dealing with cancer, medical case management, financial medical matters, and so on. Edgar has developed this website so that others may benefit from his experiences and his ongoing research."

"Acinic / Acinar / Acinous Cell Carcinoma is a rare salivary gland cancer, comprising approx. 6%-10% of all salivary gland cancers. Salivary Gland cancers themselves only comprise between 0.3% and 0.9% of all cancers in the United States. Acinic cell carcinomas account for approx. 5% to 11% of those U.S. salivary cancers, although some studies have made that number much lower (2.5%). The National Cancer Database identified 1353 cases of acinic cell carcinoma of the head and neck in the U.S. from 1985 to 1995. That averages out to about 135 cases per year. Acinic cell carcinomas account for approx. 3-13% of all malignancies of the parotid gland, and are rarely seen in other salivary tissues. They make up approx. 4% of all minor, and 2-4% of all major salivary gland tumors."

Yikes "Edgar has been researching the disease and treatment options, as well as experimenting with various treatments on himself" - lol.

Edgar also runs a mailing list called the Acinic Cell (ACIN-CELL) email group hosted by ACOR.ORG. You can read about it and how to join (and about other relevant mailing lists) on this page www.aciniccell.org/email_groups.html or you can go to http://listserv.acor.org/archives/acinic-cell.html or find it from the www.acor.org home page.

Acoustic Neuroma
The Acoustic Neuroma Association has a website at www.anausa.org, with plenty of information, and support options including an active forum. To find the forum, try this direct link www.anausa.org/forum/ or look for the link to Support Groups on their home page.

Adenoid Cystic Carcinoma
The Adenoid Cystic Carcinoma Organization International is an all-volunteer organisation with a website at www.accoi.org. They say "Adenoid cystic carcinoma ("ACC") is a rare cancer that usually occurs in areas of the head and neck but can occur in other parts of the body as well. Both children and adults may develop ACC, although it occurs more often in adults over age 40."
"This website provides information about treatment, research, clinical trials, organizations offering help with medical expenses, and more."
"We maintain a free email Information Group where ACC patients and caregivers share all types of information about ACC in an atmosphere of support." When I checked on 11th January 2007 there were 749 members in the group. The direct link to the group is http://health.groups.yahoo.com/group/Adenoid_Cystic_Carcinoma_Organization/

They also provide an online forum for doctors only, offering doctors interested in ACC an opportunity to share information about treatment and research.

Amyloidosis

Amyloidosis is an uncommon condition in which amyloid protein fibrils build up in one or more organs in the body, and it can occur in association with multiple myeloma. There are a few websites set up by survivors and supporters around the world that provide information and support for those involved with amyloidosis and give contact details for support groups.

In Australia the Reid family has formed Amyloidosis Australia Inc, a registered charity, and they have created an excellent website at www.amyloidosisaustralia.org. As well as providing plenty of information, they have a very good links page. I won't repeat the links they give - rather I recommend you visit their website, and use their links page to find the other amyloidosis and related websites on the net.

Chordoma
Chordoma is a rare cancer that can occur almost anywhere along the spinal cord. You can read a brief description on the National Organisation for Rare Disorders website www.rarediseases.org  on this webpage
www.rarediseases.org/search/rdbdetail_abstract.html?disname=Chordoma

There is an excellent online support group called the Chordoma Support Group at http://groups.msn.com/Chordoma - "an international, online, support group for all those affected by Chordoma to offer each other friendship, support and information. We welcome patients, caregivers, family and friends. ... There are more than 230 registered members as of September 2005." The website includes active forums and links to many relevant websites and sources of information.

Merkel Cell Carcinoma
There is a discussion group called the Merkel Cell Cancer Discussion Group, for those with this rare form of skin cancer and their supporters to share experiences. They have a website at http://groups-beta.google.com/group/merkelcell/web?hl=en  where you can read about the group's activities, see some pictures of MCC, read messages, and join if you wish. When I visited on October 14th 2006 there were 81 members, and 427 messages had been posted in the previous month.

 

A website called "Merkel Cell Carcinoma  Information for Patients & Their Physicians" at www.merkelcell.org provides good basic information about MCC, and its diagnosis, staging, prognosis and treatment, and gives links to news and research articles. It's been prepared by cancer experts and is published under the name of the Seattle Cancer Care Alliance (a large cancer center in the USA). 

 

They say "MCC, sometimes referred to as a neuroendocrine carcinoma of the skin, arises from the uncontrolled growth of Merkel cells in the skin. It is a rare skin cancer with roughly 1000 cases per year in the United States, making it about 40 times less common than melanoma."
"We have assembled this information to answer frequently asked questions about Merkel cell carcinoma (MCC). Since MCC is a rare malignancy, few patients are familiar with the disease and few doctors are familiar with its treatment. Easy access to understandable information is often difficult to obtain. In this resource, we have combined our review of the best available literature and our experience caring for over 60 patients with MCC ... since 2000."

Vaginal Cancer
EyesOnThePrize at www.eyesontheprize.org is a website run by a support group for those involved with gynecologic cancers including vaginal cancer.

They say "Welcome to our online support group for gynecologic cancer survivors! Women with cervical, uterine (endometrial and sarcoma), ovarian, vaginal, vulvar, gestational, and tubal cancer join together to share information and emotional support for living with reproductive cancers."

The site includes some information in the form of an FAQ, a mailing list, and a good list of links to other sites.

Vulva Cancer
EyesOnThePrize at www.eyesontheprize.org is a website run by a support group for those involved with gynecologic cancers including vulva cancer.

They say "Welcome to our online support group for gynecologic cancer survivors! Women with cervical, uterine (endometrial and sarcoma), ovarian, vaginal, vulvar, gestational, and tubal cancer join together to share information and emotional support for living with reproductive cancers."

The site includes some information in the form of an FAQ, a mailing list, and a good list of links to other sites.

There is a support group called Vaco-Vulvacare · Vulva Awareness Campaign Organisation, with a website at www.vaco.co.uk I'm sure you'll find really valuable, and a Yahoo Groups website at
http://health.groups.yahoo.com/group/vaco-vulvacare/?yguid=112210630
They say "We are a small, but very caring group who are here to support and help ladies who have been through Vulval Cancer, Radical Vulvectomy, Groin node dissecton, VIN, Pagets Disease of the vulva, Vulva surgery Vaginal Cancer, Also HPV related cancers."
When I visited their website on October 31st 2006 there were 64 members in the group and 265 messages had been posted in the previous 7 days.

The Royal College of Obstetricians and Gynaecologists (United Kingdom) has produced a "working party report" called "Management of Vulval Cancer" published in January 2006. "Working Party reports are deliberations of groups established specifically to address an area of service. The purpose is to produce guidance for those providing, managing and commissioning services." So it's a document written for the medical profession rather than for patients and supporters but if you have vulval cancer and you're deeply into exploring the topic you may find it of considerable interest. To find the document go to their home page at www.rcog.org.uk and type "vulval" into their search window and look for "Management of Vulval Cancer" in the search results, or try this direct link www.rcog.org.uk/index.asp?PageID=1187.

OTHER INTERNET RESOURCES

Here are some more internet resources relating to cancers you may find valuable.

Cancercare is a large USA-based organisation "that provides free, professional support services for anyone affected by cancer." On their website at www.cancercare.org you can find some information resources, advice on such matters as financial assistance, and counseling services (online, telephone and face-to-face). There are also some online support groups or forums.

The website RxList at www.rxlist.com - self-described as “The Internet Drug Index providing fast, reliable information to both the consumer and the medical professional” - has information about hundreds of medicinal drugs and also active forums or discussion boards on the more popular drugs as well as forums for discussing less popular drugs and alternative therapies. The link to their forums index page is www.rxlist.com/rxboard.htm.

If you have concerns about fertility in relation to cancer and its treatment, go to this page www.bestcancersites.com/fertility for links to websites with information and support on fertility issues (and you can use your back button to return to this page).

There are links to lymphedema websites on this page www.bestcancersites.com/lymphedema (and you can use your back button to return here).

A good website for finding clinical trials relating to any type of cancer is the USA Government’s National Cancer Institute site at www.cancer.gov - go to their home page and click on the link Clinical Trials, or click on this direct link www.cancer.gov/clinicaltrials.

There’s another USA Government website called ClinicalTrials.gov at www.clinicaltrials.gov where you can search for trials.  “ClinicalTrials.gov offers up-to-date information for locating federally and privately supported clinical trials for a wide range of diseases and conditions” and “ClinicalTrials.gov currently contains approximately 12,600 clinical studies sponsored by the National Institutes of Health, other federal agencies, and private industry. Studies listed in the database are conducted in all 50 States and in over 100 countries. ClinicalTrials.gov receives over 4 million page views per month and hosts approximately 17,000 visitors daily.”

I suggest starting your search for clinical trials with the National Cancer Institute site at www.cancer.gov and then trying the ClinicalTrials.gov site. I don't know if ClinicalTrials.gov includes the same database as the NCI site but it doesn’t use the same search form so it might turn up something different anyway.  Both sites include trials around the world as well as those in the USA.

You could also try the “American Cancer Society /EmergingMed Clinical Trials Matching Service ... This free Clinical Trial Matching and Referral Service is made available to American Cancer Society visitors through a collaboration with EmergingMed. ... Fill out one questionnaire and within seconds you'll know if your profile matches any clinical trials in our system. The EmergingMed database contains more than 3,000 clinical trials for treatment, prevention and early detection of cancer.” Look for the link to clinical trials on the home page of the American Cancer Society or try this direct link http://clinicaltrials.cancer.org .

There are links to nutrition and excercise guidelines on this webpage nutrition and excercise guidelines.

For anyone considering trying an alternative treatment for cancer (one that is not mainstream medicine and scientifically demonstrated to be safe and beneficial) the website Quackwatch has a very good section on their site called “A Special Message for Cancer Patients Seeking "Alternative" Treatments”. It will help you decide whether an alternative treatment you are considering is safe and might be beneficial in some way, or whether it might be unsafe and/or fraudulent. The direct link is www.quackwatch.org/00AboutQuackwatch/altseek.html or you can find the link on their home page at www.quackwatch.org.

The American Cancer Society website has a valuable section called "Complementary and Alternative Therapies". It's buried deep in their website and difficult to find - there's no link to it from their home page. Try this direct link www.cancer.org/docroot/ETO/ETO_5.asp?sitearea=ETO  or else put the word alternative into the search window on the home page and look for a link to the section in the search results. If you're thinking of trying a specific alternative or complimentary treatment you've come across on the internet or elsewhere you may find information about it in this section.

Another website that discusses the subject of alternative treatments in some detail is the website of the National Center for Complementary and Alternative Medicine at www.nccam.nih.gov.

The American Cancer Society has a very good information page giving advice on how to use the internet for finding information on cancer, and how to determine if that information is reliable. The direct link to it is Cancer Information on the Internet.

More suggestions please

If you know of any other good rare cancer websites large or small, or active forums (message or discussion boards) or mailing lists on rare cancers you would like to see added to this page, or you find any errors or broken links, please send me an email at
everest@bestcancersites.com.

Ed Everest, Adelaide, Australia

Page updated 20th September 2006

everest@bestcancersites.com

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