TheNational Leiomyosarcoma Foundation(NLMSF) was founded in 1999, by a caregiver, in support of his wife’s LMS diagnosis. The focus of the Foundation: A resource for the LMS community of patients, families, and caregivers experiencing leiomyosarcoma (LMS) – a sarcoma subtype, affecting connective and smooth muscle tissue.
The Foundation hosts multiple onsite patient-family education symposia throughout the United States annually. The NLMSF also hosts monthly virtual Learning Curves Workshops:https://nlmsf.org/events/encompassing the Patient-Caregiver Advocacy Roundtable and the Survivors Inspire Peer Network – bothoffering the opportunity to become aware of treatment and research updates, as well as receiving support and guidancefor quality of life in survivorship during and after treatment is completed. Short educational podcasts are also availablehttps://docs.google.com/document/d/1PYegrpmcadTdhFfOwS6ybESuePyA6Yj04Y9aQz_gD3U/edit
In addition to the main NLMSF website, the foundation hosts two additional websites: aresearch focused website and a website for well-being survivorship support during and after treatment is completed: “NLMSF Life Change – “A New Normal.”The Foundation generates weekly newsletters for clinical trial updates, research updates, well-being resource information, insurance guidance, and more:https://nlmsf.org/news-tracker/
In 2019, NLMSF launched its inauguralLMS Research Roundtable and Scientific Think Tank, in partnership with Sarcoma Patients EuroNet (SPAEN), bringing together dedicated/committed researchers from across the globe to determine the priorities in LMS precision research, as well asestablishing LMS -specific standard evidence-based guidelines for patient care and treatment, also addressing the unmet needs of both through the Roundtable Focus Workgroups:https://leiomyosarcoma.info/irr-forum/