We hope that the Forums section and Quick Links on this website help you to find someone with your cancer. People with rare cancers need all of the support they can get. Many people feel isolated because they canít find information on their condition. Our purpose in developing this page is to give you some tools and techniques to finding others with the same diagnosis. We will go through both traditional and non-traditional methods of tracking down others.
Because you have a rare cancer you need to think about finding others on a global basis. My daughter was diagnosed with a rare brain tumor at the age of six months. Her type of tumor had only been described since 1993. So far I have found 13 other families world-wide that have her type of cancer using these methods. Finding others can be beneficial not only for moral support but also to coordinate and compare therapies. Donít give up, you can find others and make it easier for them to find you.
Rare Cancer Forums - online forums by cancer type and other needs.
Alliance of Information & Referral Services - AIRS is the professional association for nearly 1,000 programs throughout North America that provide information and referral on human services in their respective communities. Some organizations have matching patient programs. Read about the 211 initiative on this site.
American Cancer Society - The American Cancer Society uses local chapters to match people with similar diagnosis. I am told that each town has a "navigator" who helps cancer patients find whatever kind of help they need including other patients with rare diagnoses. Phone: 1-800-ACS-2345 to find your local chapter.
Farber Cancer Institute - Dana Farber in
Boston also has a One to One matching program; Susan DeCristofaro
Phone: Susan DeCristofaro at (617) 632-4880 Social Work Dept. at (617) 632-3301
General Hospital - They have a Network for Patients and Families that
matches people with similar diagnoses.
Phone: Sally Hooper at (617) 724-3876
Anderson Support Contact Program - This patient and caregiver matching program will have a
member contact you in 24 to 48 hours with any matches that they
have found in their network.
This is an NIH Cancer Center so it is a very good bet for
Phone: Houston (713) 792-2553 Outside Houston: 1-800-345-6324
Bloch Cancer Foundation - This a service that
matches people who have the same diagnosis.
If you canít find a match please volunteer to be a
Phone: 800 - 433-0464 Fax: 816-931-7486
Network of Strength - Callers can be matched
with a survivor, patient and/or supporter who have had a similar
experience with breast cancer.
Phone: English 1-800-221-2141 | EspaŮol 1-800-986-9505
Come up with a list of doctors and try making contact through them. At first I couldn't find anyone either. I tried the American Cancer Society, North American Brain Tumor Association, the Pediatric Brain Tumor Foundation, National Organizations for Rare Diseases, and pretty much ended up with nothing. My daughterís type of tumor was only documented as of 1993 so most the journal articles that I could find were case descriptions, surgery reports and histologic findings presented at conferences, that sort of thing. I started a list keeping a list of the references that kept recurring in the works sited section at the end of the journal articles. From this I came up with a list of doctors who at least had experience with this type of tumor.
Then I started hunting the doctors down at their hospital or research institution through the websites. I found that if you call them and talk to their assistant/care coordinator or whoever sets their appointments, and explain the situation that you are trying to connect with others who also have this type of rare cancer. Definitely emphasize that you have read their journal articles or conference preceedings, so you know that they have at least one patient with this rare type of tumor. Ask if they can give you contact information, usually an email, which is not personal information like their home address. If they refuse to do that you can leave your email address or other contact information. I got one helpful receptionist to put a note in the patients chart explaining the situation and asking them if they would like to contact me at my email address. Some doctors even give their email addresses in their contact information on the hospital directory websites.
Get your Oncologist to be your advocate. I also got my oncologist to ask around with some of her peers at the annual Pediatric Oncology Group Conference, and see if she could find some other cases and patient contacts. My oncologist readily admitted that we needed to find a specialized pediatric-neuro-oncologist to deal with this rare tumor, and was great at helping us.