Partnerships

Living LFS is a member of the Coalition Against Childhood Cancer (CAC2), a collaborative network of organizations and individuals supporting and servicing the childhood cancer community. CAC2 effectively advances a variety of childhood cancer causes by unifying the childhood cancer community through broad-based coordinated action and collaboration that leverages the strengths and expertise of its individual members and minimizes duplication of effort. The primary values underlying CAC2 are to put the children and their families first in everything we do and to support organizations active in the fight against childhood cancer.

Living LFS recently joined the EDISYN (Early Detection in SYndromic Neoplasms) Consortium; whose focus is investigating liquid biopsy for early cancer detection in patients with LFS. In support of this consortium, Living LFS offered attendees of their 2019 Family Camp the opportunity to enroll in a study in which patients will donate blood on a set frequency and be monitored over time. In total, nearly 40 people enrolled in the study, helping to kick start the investigation to a better way to detect cancer in LFS patients.

Living LFS is a PROUD Member of the Global Genes Rare Foundation Alliance, a coalition of more than 600 rare disease organizations that believe in the power of collective impact and understand that together, we are more powerful. Foundation Alliance partners collaborate and exchange best practices to drive better outcomes for the rare disease community.

Are you a cancer fighter, survivor or caregiver looking for one–on–one support? Living LFS is pleased to partner with Imerman Angels, matching individuals with Mentor Angels for the chance to ask personal questions and receive support from someone who is uniquely familiar with the experience. Soon our website will provide the opportunity to request a mentor, or to become one.