Renal Medullary Carcinoma- Rare But Not Invisible
Have you or your loved one been diagnosed with renal medullary carcinoma?
Because learning more about RMC is an important step in the battle to defeat it, we have developed a registry to gather information from people who are living with RMC or have passed away. This information can help doctors and scientists learn more as they work toward a cure.
Note: No one will access your personal information except those persons authorized to do so for official business.
If you wish to participate in the registry, please click on the link below.
Tissue Donation For Research
We have an exciting partnership with Pattern.org (an initiative of the Rare Cancer Research Foundation) which allows patients to donate excess fresh tumor tissue from surgery or biopsy to research. Pattern’s working with the Broad Institute of MIT and Harvard to create new rare cancer cell lines through the Broad’s "Cancer Cell Line Project" (CCLP). Only a limited number of indications are initially included in this project and renal medullary carcinoma is included so we’re letting patients with upcoming resections or biopsies know about this exciting opportunity.
Here’s how it works: Go to Pattern.org and click on “join us” to view more information about the project. You’ll be answer a few basic questions such as name, phone number and diagnosis. Then you’ll be able to access details about the project & if you decide it’s right for you, you can sign an online consent to donate your excess tissue. That’s all you have to do as Pattern will work directly with your doctor, as well as the local pathologist to coordinate the contribution. Only excess fresh tissue not needed for your clinical care will be taken. Pattern.org will de-identify the tissue sample (which means they’ll remove all personal information) and have the sample transported directly to the Broad Institute for processing. There is NO cost to you. You’ll be notified once your tissue sample has been received at the Broad, but won’t receive any other information back from the project.
The great news is that if a successful cell line model is created from a tissue sample, it will be genetically characterized and the cell line and corresponding de-identified data will be made available to qualified researchers throughout the world for use in their research. By doing so, this will provide an invaluable resource for researchers to better understand RMC and hopefully lead to science that contributes to the development of more effective treatments.
Contact information- Please submit your information below to find out about volunteer opportunities.