Support for Your LMS Journey
The National Leiomyosarcoma Foundation offers various support groups designed to connect, inform, and empower individuals affected by Leiomyosarcoma. Whether you're newly diagnosed, a long-term survivor, or a caregiver, we provide ways to connect with others who understand your journey.
Support Group Types
One-on-One Support
Connect individually with peers and professionals who understand your journey
Online Communities
Join virtual support groups to share experiences and find support anytime
Regional Groups
Meet with others in your area for in-person connection and support
Specialized Support
Access programs tailored to specific needs like caregiving and bereavement
Available Support Groups
| Support Group | Type | Description | Connect |
|---|---|---|---|
| LMS LIFELINE Buddy Program | One-on-One | Peer-to-peer patient match program for personalized support | Request Match |
| Connect With a Clinician | Professional | Access volunteer sarcoma specialists who answer questions about treatment options | Ask Question |
| NLMSF Facebook Group | Online | Official foundation support community for patients and caregivers | Join Group |
| Stand Up to LMS | Online | Advocacy and support network focused on empowerment | Join Group |
| Cancer Sucks - LMS | Online | Candid discussion and emotional support community | Join Group |
| Rocky Mountain LMS Support | Regional | Colorado, Wyoming, Nebraska patient-caregiver connection | Contact Group |
| LMS Clinical Trials Perspectives | Discussion | Bi-monthly peer-to-peer discussion about clinical trials experiences | Join Discussion |
| LMS ABC's Support Group | Educational | For new and recurring diagnoses: managing, asking questions, and coping | Learn More |
| Caregiving Counts | Caregiver | Support specifically for caregivers of LMS patients | Get Support |
| Survivorship & Coping Workshops | Collaborative | Patient-caregiver team discussions for sharing experiences | Find Workshop |
| Open to Hope | Bereavement | Support for families who have lost a loved one to LMS | Visit Website |
Educational Resources
Recorded Programs & Podcasts
Access our library of educational content at your convenience:
- Podcasts for Wellbeing - Addressing anxiety, caregiving support, and more
- Research Community Recordings - Insights on clinical trials, research updates, and treatment advances
- LMS LIVE - Research in Review - Latest research with opportunities to ask questions
Educational Programs
Join our interactive learning opportunities:
- LMS ABC's of the Challenging Diagnosis - For new and recurring diagnoses: managing, coping, and asking the right questions
- LMS Clinical Trials Patient/Caregiver Perspectives - Bi-monthly peer discussion group
- Virtual & In-Person Education Symposia - Updates on treatments, trials, research, and integrative medicine
Specialized Support Services
Caregiver Support
Resources specifically for those supporting loved ones with LMS:
- Caregiving Counts - Guidance and support from experienced caregivers
- Survivorship and Coping Workshops - Patient-caregiver team discussions for sharing experiences and coping strategies
Bereavement Support
Compassionate resources for families experiencing loss:
- Open to Hope - Support group for spouses, families, and children when a loved one passes from this disease
Survivorship Care Planning
Guidance for life after treatment:
- Personalized Care Planning - One-on-one planning that begins with you and continues with your oncology care team
Research Participation Opportunities
Genomic and Molecular Testing
Contribute to research while informing your treatment options:
- Perthera - Precision oncology solutions
- CERTIS - Patient-derived cancer models
- Boston Gene - Molecular profiling
- Broad Institute of MIT/Harvard - Advanced genetic research
Patient-Driven Research Initiatives
Help advance LMS research through these collaborative programs:
- Count Me In Project - Partnership with NLMSF for patient-driven data and tissue sample sharing
- Rare Cancer Research Foundation - Collaboration with NLMSF
- International LMS Research Roundtable - Connecting global researchers with patient voices (currently in its 7th year)
- Repurposing Drug Workgroup for LMS - With the Hemming Lab, W. Yao Lab, CURE ID, and TRACER Project
Our Partnerships
NLMSF is proud to be part of these collaborative efforts to improve care and outcomes for LMS patients:
ECOG ACRIN Workgroups
- Sarcoma Workgroup
- Cardiovascular Workgroup
- Patient Advocacy Workgroup
Global Networks
- Sarcoma Patient Advocacy Global Network (SPAGN)
- NORD Rare Cancer Coalition
- Sarcoma Coalition (Co-founder)
State Initiatives
- Colorado Palliative Cancer Taskforce
- Colorado Survivorship Taskforce
- Colorado Cancer Coalition
Allied Organizations
- Sarcoma Alliance
- Sarcoma Foundation of America
- Patient Advocacy Consensus Group
Community Voices
"The NLMSF Buddy Program connected me with someone who truly understood what I was going through. Having someone to talk to who had been through the same treatments made all the difference in my journey."
"As a caregiver, I felt lost and overwhelmed until I found the Caregiving Counts program. The guidance from other caregivers helped me navigate this difficult journey and better support my wife."
"The Facebook groups have been my lifeline. Being able to connect with others who understand exactly what you're going through at any time of day or night has helped me feel less alone in this fight."
Frequently Asked Questions
How do I get matched with a Buddy in the LIFELINE program?
Complete our confidential form describing your diagnosis, treatment stage, and specific concerns. Our team will carefully match you with a trained buddy who has a similar experience. Matches are typically made within 3-5 business days.
What can I expect when I call the 24/7 LIFELINE Support Hotline?
Your call will be answered by a trained volunteer who understands the LMS journey. They can provide emotional support, information about resources, and practical guidance. All conversations are confidential, and follow-up assistance can be arranged if needed.
How can I participate in the genomic and molecular tumor testing programs?
Speak with your oncologist about your interest in genomic testing. The NLMSF can provide information about partner programs like Perthera, CERTIS, Boston Gene, and the Broad Institute. Some programs may require tumor tissue samples, while others can work with blood samples or existing test results.
Are there costs associated with NLMSF support programs?
Most NLMSF support services are provided at no cost to patients and caregivers, thanks to our donors and volunteers. Some specialized genomic testing programs may have costs, though financial assistance might be available. Our team can provide specific information for each program you're interested in.