Links/Resources: TILs & Advanced CELL and Gene Therapies, Clinical Trials, Mucosal and RARE Melanoma

 CU Center for Rare Melanomas, a joint clinical and research center dedicated to the understanding and treatment of rare, non-sun related types of melanomas such as mucosal, acral, and ocular. 

WHY TAKE OUR SURVEY? One of the questions we frequently get asked by patients is "why did I develop mucosal melanoma?" Researchers are  working hard to identify possible genetic factors that may underlie mucosal melanoma risk, but WE NEED PATIENTS to anonymously complete surveys and provide us medical history and lifestyle data that researchers have no access to otherwise. Our goal is to learn more about mucosal melanoma risk factors which may ultimately lead to PREVENTION and EARLIER DETECTION.

THE SURVEY: The link below will take you directly to our anonymous patient survey. After you complete the survey, please enter your email address (this will NOT be saved anywhere) so you can be sent your survey ID number and a form to print off and give to your oncologist. PLEASE write your ID number on the form and give to your oncologist so they can anonymously add detailed information about your melanoma and treatments which will be linked to your responses. Your oncologist will NOT be able to see any of your survey responses.

I often get asked by the Mucosal Melanoma Community who would like to make a financial contribution on where to do so. There are many Melanoma organizations to choose from, but CU Anschutz in Aurora Colorado i would say is always my first recommendation when asked. I have walked the halls, toured the research lab, and seen the biorepository with my own eyes. Yes, i am partial to them because this organization at this campus literally saved my life, but they are also a center of excellence known for their compassion and care. Support our faculty, researchers, clinicians and students at the forefront of medicine. Your gift drives revolutionary solutions in health care, research and education, click the link below.

 RARE®, a registry for patients with acral and mucosal melanoma, provides a free, interactive, web and mobile-friendly tool to share information and experiences, disease history, advance research and awareness, and get potential matches to clinical trials.  Your story—the story of your health, of your history, of your experiences— hold power: the power to inform, the power to connect, and the power to drive research forward for rare melanoma subtypes.