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.
Advocacy organizations
Asdent
Asdent is a nonprofit organization based in Spain. Founded in 2011, the group is dedicated to raising funds for people with Dent disease.
Remember the Girls
Remember The Girls’ raises awareness of the many issues facing female carriers of x-linked genetic disorders, while providing a forum for x-linked females to share stories, ask questions, develop friendships, and much more.
NORD
The National Organization for Rare Disorders (NORD) is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them.
Learn more about Dent disease from NORD’s Rare Disease Database
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
RARE-X is a collaborative platform for global data sharing and analysis to accelerate treatments for rare disease.
Global Genes
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
Rareshare is an online platform that provides a social community for those affected by rare diseases. – Community Message Boards
