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Robin Martinez, one of the listowners (administrators) for KIDNEY-ONC, CHROMOPHOBE-RCC, and PAPILLARY-RCC, three of over 100 mailing lists provided by the Association of Cancer Online Resources (ACOR). Subscribers to our mailing lists communicate via email sent simultaneously to all members. Patients, survivors, caregivers, and professionals discuss current treatments and how to choose among them, side effects, clinical trials, where to find experienced doctors, problems of living with a long-term disease, emotional support, and much more.
In 2011 KIDNEY-ONC won grand prize for an outstanding example of use of mailing list technology from L-Soft, the company which first developed this technology 27 years ago. Its members exemplify the e-patient movement in which patients become engaged, empowered, and well-equipped partners in their own health care.
Robin’s late husband was diagnosed with renal cell carcinoma in 1988 and died from it in 1998. During her own search for information in 1997, she became one of the administrators of the KIDNEY-ONC mailing list and later its offshoots for papillary and chromophobe RCC.
She has also served as a consumer reviewer for kidney cancer grant applications to the Department of Defense. She is affiliated with Action to Cure Kidney Cancer and the International Kidney Cancer Coalition. She lives in Denver, Colorado, with her adult son.
Robin will share information about ACOR’s latest initiative, SmartPatients, at http://www.smartpatients.com
