JOIN THE MEC BIOBANK & DATA COMMONS
YOU CAN HELP SHAPE THE FUTURE OF MEC RESEARCH
Progress in rare cancer research begins with patients and families who are willing to share their experiences and tissue samples. That’s why cureMEC, in partnership with the Rare Cancer Research Foundation, has established the first-ever Myoepithelial Carcinoma (MEC) Biobank and Data Commons. This initiative is a vital step forward in understanding this rare cancer and developing more effective treatments.
Donated tissue and fluid samples are among the most powerful resources in rare cancer research. They give scientists the raw material to test new therapies, discover treatment targets, and uncover critical insights into MEC. By combining these samples with patient medical histories and genetic information, researchers can connect the dots in ways that accelerate discovery and bring hope closer.
HOW IT WORKS
What is the MEC Biobank
A secure, centralized collection of donated tissue and fluid samples from MEC patients. These samples allow researchers to study the biology of MEC in the lab, search for treatment targets, and test new therapies that could lead to breakthroughs.
Without access to patient samples, research progress stalls. With them, researchers can drive forward discoveries that would otherwise be impossible.
“Without patient samples, research stands still. With them, everything moves forward.”
What is the MEC Data Commons
A confidential database where patients and families can share medical histories, treatment experiences, and genetic information. This data helps researchers identify patterns, track outcomes, and improve how MEC is diagnosed and treated.
The MEC Data Commons is designed to break down silos in rare cancer research. By sharing data openly and securely, we give researchers worldwide the opportunity to learn from each patient’s experience and build on each other’s progress—accelerating the search for answers that no single institution could achieve alone.
“Every story adds a piece to the puzzle.”
WHY IT MATTERS
Because MEC is so rare, every contribution is incredibly valuable. Tissue and data are the lifeblood of rare cancer research—and without them, progress is impossible. Your participation provides the essential foundation researchers need to drive meaningful discoveries with more knowledge, more treatments, and more hope.
“Together, we can turn rare stories into powerful science.”
WHO CAN JOIN
Individuals diagnosed with Myoepithelial Carcinoma
Parents or guardians of pediatric patients with Myoepithelial Carcinoma
Families of deceased patients (with access to preserved tissue or data)
HOW TO PARTICIPATE
1. Fill out an interest form with the Rare Cancer Research Foundation (click here)
2. A team member will guide you through the consent and sample process
3. Participate in ongoing surveys or studies (if you choose)
Privacy & Safety
All data and samples are handled with the highest ethical and scientific standards. Your privacy is fully protected, and participation is always voluntary.
Take Action. Find Hope. Drive Change.
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Patients & Families
Recently diagnosed with MEC?
Explore resources to understand your diagnosis, join the MEC Registry, learn about tissue donation and clinical trials, and connect through warrior stories.
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Advancing Research
We partner with scientists, clinicians, and collaborators to accelerate discoveries in MEC.
Access research publications, connect with peers, and contribute to the growing body of knowledge.
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Get Involved
Every voice and every dollar makes a difference.
Join the community, fundraise, donate, and advocate for ultra-rare cancer research—together, we can expand the mission.