Join Now.

The registry, overseen by Potocki Lupski Syndrome (PTLS) Research Advocates, is a participant-driven project with the purpose of furthering our understanding of this disorder and developing novel therapies.

Your unique story is a crucial piece in our mission to treat Potocki Lupski Syndrome. Join our patient registry and become a vital force in driving forward research, insights, and potential treatments for this condition.

Join us in this collective endeavor as we stand together, united in our determination to make a meaningful impact on the lives affected by Potocki Lupski Syndrome. Your contribution matters in our journey toward a brighter, healthier tomorrow.

By sharing contact information and genetic reports in a secure central database, families will enable researchers to efficiently coordinate diagnostic studies and treatment trials. If researchers are also able to contact affected families with follow-up research questions, a dialogue between the community and researchers can emerge, greatly facilitating progress in PTLS research.

By registering, you empower our dedicated team of researchers with invaluable information that fuels our efforts to understand and combat this syndrome. Your participation is a beacon of hope, guiding us toward a future where solutions are within reach

Your support doesn’t stop there. Consider making a donation to further bolster our research efforts. Every contribution fuels our mission, propelling us closer to tangible solutions for this syndrome.

Together, let's transform hope into reality. Register, share, and donate—your actions today are the building blocks of a brighter future for those impacted by Potocki Lupski Syndrome."