Latest News

Batten Disease Clinical Research Consortium Announces 2026 Early Career Investigator and Pilot Project Grant Awardees

The BDCRC has awarded the 2026 Early Career Investigator Grant to Aikaterini (Katerina) Chatzipli, PhD, and the 2026 Pilot Project Grant to Ruchira Singh, PhD.

Headshots of Dr. Chatzipli and Dr. Singh

Patient Advocate Spotlight: Kristen Hutchinson Spytek Accelerates Awareness and Research in Congenital Cytomegalovirus

October 18, 2022

Patient Advocate Spotlight: Erica Barnes Fights for Children with Metachromatic Leukodystrophy and Other Rare Diseases

August 30, 2022

Patient Advocate Spotlight: Kristin Anthony Brings Expertise in PTEN Hamartoma Tumor Syndrome Advocacy to New Role as Chair of RDCRN Patient Groups

August 5, 2022

Patient Advocate Spotlight: Andrea Miller Creates Global Connections for Congenital Disorders of Glycosylation

July 7, 2022

Andrea and her daughter, Bianca, celebrating World CDG Awareness Day

Patient Advocate Spotlight: Mark Rudolph Supports and Connects the Dystonia Community

May 17, 2022

Patient Advocate Spotlight: Connie Lee Creates Connections for Cerebral Cavernous Malformation Research

October 26, 2021

Patient Advocate Spotlight: Kristen Wheeden Steps into Lead Role for RDCRN Patient Groups

August 2, 2021

Kristen Wheeden and her son, Brady, standing on their porch

Consortium Spotlight: New Consortium Targets Congenital and Perinatal Infections

January 26, 2021