Dent disease might make a patient one in a million, but they are not alone. There are hundreds of people ready to support, educate, and advocate alongside you and your family.
The National Organization for Rare Disorders (NORD) is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them.
Groups & networks
Rare Kidney Stone Consortium
Drs. John Lieske and David Sas at Mayo Clinic Rochester, MN manage the Rare Kidney Stone Consortium Dent Disease Program.
RARE-X is a collaborative platform for global data sharing and analysis to accelerate treatments for rare disease.
Global Gene is an advocacy organization for individuals and families fighting rare and genetic diseases.
The Dented Kidney
The Dented Kidney is a place where patients with Dent Disease and their family and friends can connect!
Rareshare is an online platform that provides a social community for those affected by rare diseases. – Community Message Boards