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Circle of Hope

Addressing Patients' Common Challenges

The National Leiomyosarcoma Foundation's Circle of Hope — the LMS / All Sarcoma Patient-Family / Patient Advocacy Foundations Community Roundtable

National Leiomyosarcoma FoundationLMS/Sarcoma Community Roundtable — The Circle of Hope — Patients and CaregiversClinical Trials Patient-Caregiver Perspectives Network — Virtual Discussions
Patients & Caregivers Common Challenges Think Tank Network

This is a Think Tank Network of patients and caregivers coming together to discuss experiences from initial diagnosis to the end of various treatments / clinical trials and beyond. Patient Advocacy foundations are also invited to participate.

We will collectively discuss what we have learned so far — identify and address the common challenges (unmet needs) in care and treatment from A to Z.

Announcing a New NLMSF Initiative for 2026

Circle of Hope

Community Roundtable / Clinical Trial Patient Perspectives

The National Leiomyosarcoma Foundation's Circle of Hope — the LMS / All Sarcoma Patient-Family / Patient Advocacy Foundations Community Roundtable.

This is a Think Tank Network of patients and caregivers coming together to discuss experiences from initial diagnosis to the end of various treatments / clinical trials and beyond. Patient Advocacy foundations are also invited to participate.

We will collectively discuss what we have learned so far — identify and address the common challenges (unmet needs) in care and treatment from A to Z.

Meetings are held quarterly throughout the year. Upcoming meeting announcements are posted on the NLMSF homepage.

Initiative Summaries

Tight summaries of each Circle of Hope initiative.

LMS/Sarcoma Community Roundtable — The Circle of Hope — Patients and Caregivers

Circle of Hope Community Roundtable: A Collective Purpose

The Circle of Hope Community Roundtable is a collaborative forum where patients, caregivers, and patient advocacy organizations come together to learn, share, and inspire meaningful progress.

  • A collaborative forum that encourages open dialogue among patients, caregivers, and advocacy groups.
  • A trusted, supportive space to share personal experiences, ask questions, and learn from one another.
  • A community built on respect, connection, and shared understanding, where every voice is valued.
  • A focus on collaboration and innovation, generating constructive ideas and actionable solutions that improve the lives of those affected by sarcoma and leiomyosarcoma.
  • A commitment to advancing patient-centered care, ensuring that the experiences and perspectives of patients and caregivers help shape research, education, and advocacy efforts.

Together, we are stronger. Together, we can create positive change for the entire sarcoma community. One conversation, one idea, and one shared voice at a time.

Clinical Trials Patient-Caregiver Perspectives Network — Virtual Discussions

Patient & Caregiver Clinical Trial Perspectives

Join fellow patients and caregivers for an open discussion about the clinical trial experience, with insights from those who have participated firsthand.

  • Hear firsthand experiences from patients who have completed a clinical trial — what they learned, what they wish they had known, and how they prepared.
  • Learn from participants currently enrolled in clinical trials as they share common challenges, unmet needs, and encouraging experiences.
  • Gain practical guidance for patients and caregivers considering a clinical trial, including questions to ask, how to prepare, and what to expect throughout the process.
  • Share your own questions and experiences in a supportive, patient-centered community where every perspective helps others navigate their journey.

Together, we can learn from one another, empower informed decision-making, and help improve the clinical trial experience for future patients.

LMS/Sarcoma Community Roundtable — The Circle of Hope — Patients and Caregivers

Why Your Input Matters

  • Clinicians and researchers value patient perspectives
  • Your experiences inform treatment approaches and clinical trial design
  • Patient voices help move care farther and faster

Key Learning Goals for the Clinical Trial Perspectives Roundtable Discussion

Participants should be able to:

  • Better understand what it is really like to participate in a clinical trial from the patient and caregiver perspective.
  • Learn how patients prepared before entering a trial and what they wish they had known earlier.
  • Recognize common challenges that may arise during participation, including travel, scheduling, side effects, communication issues, financial stressors, and emotional impact.
  • Hear positive insights and opportunities that trials may provide, including access to emerging therapies, expert care teams, closer monitoring, and contributing to future progress for other patients.
  • Understand the importance of asking informed questions before enrolling in a study.
  • Learn practical strategies for organization, advocacy, communication, and self-care throughout the trial experience.
  • Gain perspective on how caregivers and family members can prepare for the responsibilities and stressors that often accompany participation.

What Patients & Caregivers Take Away

  1. 1

    A Better Understanding of Clinical Trials

    • Clinical trials are not only "last resort" options.
    • They are essential for advancing treatments and creating future standards of care.
  2. 2

    Confidence to Ask Questions

    • Trial goals and what participation involves
    • Potential risks and benefits
    • Logistical requirements such as visits, travel, and time commitment
    • How the trial may affect quality of life
    • What support resources are available
  3. 3

    Realistic Expectations

    • What day-to-day life can look like during a trial
    • Which challenges are common and often manageable
    • What issues may arise unexpectedly
    • How to prepare emotionally as well as logistically
  4. 4

    The Importance of Support Systems

    • Trials affect the entire family unit—not only the patient.
    • Strong communication, organization, and emotional support matter throughout the experience.
  5. 5

    Patients Are Partners in Research

    • Patients and caregivers are active partners whose lived experience helps improve future trial design, patient support, and research priorities.

Join the Conversation

Questions about Circle of Hope, the Clinical Trials Patient-Caregiver Perspectives Network, or sharing unmet needs from your LMS journey? Reach out to the Foundation—your voice helps strengthen support and research for others.

View Meeting AnnouncementsContact NLMSF