Join Our Exclusive Community
Enter our moderated Facebook group to share personal stories and receive emotional support from peers facing various rare sarcoma conditions
Help accelerate new discoveries by joining our network. Get updates on clinical trials and see how your participation changes the future of rare cancer care
Find Your Direct Partner
Connect personally with a mentor who understands your specific path. We bridge the gap through private introductions to ensure you feel fully supported
Reach Out Here
We align patients and their loved ones with scientific experts and mentors. Tell us about your journey to enter the community and learn about new medical findings, insight from people with shared experiences, and how you can contribute to research.
Data Confidentiality
We prioritize the safety of your personal health data above all else. By completing this form, you agree that your details will be used solely to offer community access and research updates. Please review our full Data Protection Policy for more details. This platform does not offer professional medical diagnoses or treatment plans
Safety Information
The details you provide allow us to tailor resources to your specific needs. Please note we do not offer medical services or clinical advice. Consult with a licensed healthcare professional for any medical concerns regarding your diagnosis. To learn how we manage and protect the data you provide to our foundation, please visit our comprehensive Privacy Policy section now
General Inquiries
Who is eligible for our group?
Our space is welcoming to any patients, family members, or caregivers impacted by CIC Rearranged-related syndromes or other ultra rare sarcomas. We provide a safe harbor for sharing advice and fostering deep empathetic connections
What does the Research Patient Network involve?
This initiative links you directly to the scientific community. Members choose if they want to contribute to data banks, partake in surveys, or learn about pioneering studies designed to develop better therapeutic options for these extremely uncommon cancer variations
How are the peer matches organized?
Once you submit a request, our team identifies a match based on your specific medical profile and life situation. We start with a digital introduction through email, allowing you to choose how and when to proceed with further personal communication alone
Can I help clinical research?
Contributing to science is entirely voluntary. If you choose to engage, we will notify you of relevant tissue donation programs or patient surveys that specifically target your subtype of cancer to help drive medical innovation