2021 Update:
The COUNT ME IN PROJECT:
PATIENTS HAVE A VERY IMPORTANT ROLE TO PLAY IN HELPING TO ADVANCE LMS Research for hopeful AND ACCELERATION OF INCREASING TREATMENT OPTIONS https://bit.ly/3IAvNlL Learn More and Get Involved As Soon as Possible.
The LMS-specific COUNT ME IN project has a webpage https://joincountmein.org/lms with more details about the project which is going to start enrolling patients in early 2022. There is a button on the webpage where patients can sign-up to be notified when they can enroll in the project.
2020 Update:
The NLMSF Patient-Caregiver Advocacy Network met on July 13 for a presentation on the CANCER CELL LINE PROJECT FOR LEIOMYOSARCOMA – a Patient-Driven Project for Global Research. Dr. Jesse Boehm from the Broad Institute of MIT/Harvard made a presentation which can be accessed here.
The Rare Cancer Research Foundation (RCRF) is dedicated to curing rare cancers through strategic investments and innovative collaborations that facilitate effective research and accelerate the deployment of promising therapies.
Pattern.org, part of the Rare Cancer Research Foundation, is a patient-research matching program that enables patients to directly donate their tumor tissue and medical data to research.
Here is a link to a Dependency Map overview that illustrates the overall work of the Broad Institute – DepMap collaboration for LMS and – https://www.
RCRF Cancer Cell Line project partnership with the NLMSF established to include leiomyosarcoma on APRIL 9, 2017:


The NLMSF encourages participation in this patient-driven project.
This offers a huge opportunity to move the needle forward for potential research initiatives across the globe. Researchers can access de-identified data for research initiatives/studies they wish to pursue. If you have questions about this program please contact Annie Achee at 303 783-0924 or 303 808-3437
Announcement in CURE MAGAZINE; The National Leiomyosarcoma Foundation Is Joining A Tumor Sample Project To Advocate For LMS Patients
If a patient is facing a biopsy or surgery to extract an LMS diagnosed tumor – tissue from the procedure(s) can be offered to the Rare Cancer Research Foundation (RCRF) through a simple consent form. The RCRF takes care of the rest of the coordination to make sure your de-identified tumor sample is sent to the Broad Institute of MIT / Harvard laboratories for cell processing and hopeful growth.
The Rare Cancer Research Foundation (RCRF) is dedicated to curing rare cancers through strategic investments and innovative collaborations that facilitate effective research and accelerate the deployment of promising therapies.
Pattern.org, part of the Rare Cancer Research Foundation, is a patient-research matching program that enables patients to directly donate their tumor tissue and medical data to research
For technical questions about the RCRF and Pattern.org:
Barbara Van Hare
Director of Foundation Partnerships
Rare Cancer Research Foundation
(816) 868-6352