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Where can I find information about diagnosis or management of CLN3 Batten disease?
The average patient with a rare disease visits 8 physicians and receives 2 to 3 misdiagnoses before being correctly diagnosed. On average, this takes 7.6 years.
In rare and currently incurable diseases like CLN3 disease, the lack of a diagnosis or misdiagnoses increases family stress, is expensive, time-consuming, can result in mistreatment, and prevents access to effective family support services.
If you or your doctor suspect your child has CLN3 disease or another of the 13 forms of Neuronal Ceroid Lipofuscinoses (Batten disease), the institutions listed below provide diagnostic testing, health management, and genetic counseling services for Batten disease across United States.
Batten Disease Support Research and Advocacy (BSDRA) Foundation Centers of Excellence: [1]
Centers of Excellence
Children’s Hospital Colorado (affiliated with the University of Colorado, Denver) [2]
Children’s Hospital of Orange County (CHOC) [3]
Nationwide Children’s Hospital [5]
University of Rochester Batten Center [7]
Affiliate Centers
Boys Town National Research Hospital [8]
Children’s National Hospital, Washington D.C [9]
C.S. Mott Children’s Hospital at University of Michigan Medicine [10]
Mount Sinai Health System [11]
Rush University Medical Center [12]
Clinical guidelines for CLN3 Batten disease
Children’s National Hospital, Washington D.CC.S. Mott Children’s Hospital at University of MichiganMedicineMount Sinai Health SystemRush University Medical CenterClinical guidelines for CLN3 Batten disease.
Jonathan W. Mink, Heather R. Adams, Rebecca Ahrens-Nicklas, Brian Nauheimer Andersen, Erika Augustine, Rose‑Mary Boustany, Jonathan D. Cooper, Alex Levin, Paul Gissen, MinnaLaine, Heather L. Mason, Sara E. Mole, Miriam Nickel, John R. Ostergaard, Lori Sikorra, LaurenTreat, Ineka T. Whiteman, Ruth Williams & Angela Schulz.
Orphanet J Rare Dis(2026).
This project wasproudly supported by funding and in-kind support from the Beyond BattenDisease Foundation, and co-authored by BBDF Principal Scientific Consultant, InekaWhiteman, PhD.
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