Rare Diseases Day 2024 (Links to an external site)

Dr. Andria Ford presented “Cerebral oxygen extraction predicts brain lesion progression in Retinal Vasculopathy with Cerebral Leukocencephalopathy, a monogenic microvasculopathy” at the Rare Diseases Day Symposium 2024 in EPNEC at Washington University School of Medicine.

2021 ClayCo Foundation Innovation Research Awards

The ClayCo Foundation logo

Congratulations to the four scientists and their teams who recently were  awarded two-year grants by the Clayco Foundation for RVCL research projects. One theme of these new grants is development of model systems that are critical to determining how cells are damaged by RVCL. A model system also will greatly help development and assessment of new RVCL therapeutics. […]

Rarest of Them All: Ultra-Rare Rheumatic Diseases (Links to an external site)

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Multisystem autoimmune rheumatic diseases are rare or ultra-rare disorders linked to significant mortality and morbidity. However, with the rise of new technology, including data registries and advanced genetic analysis, rare rheumatic disease research is being propelled forward to inform future therapeutic options and improve patient outcomes.

In light of Rare Disease Day 2021, Dr Jonathan Miner, MD, PhD, discusses his work and contributions to the rare disease space, and speaks to the importance of research and the management of patients with rare rheumatic diseases.

Bob Clark describes his extremely personal experience with CRV/RVCL (Links to an external site)

In his blog (Bob Clark Beyond: More than just a blog), Bob Clark describes his extremely personal experience with CRV/RVCL. After losing his wife Ellen to the disease, and to honor her memory, he worked with Maya Lin (the creator of the Vietnam Veteran’s Memorial) to construct the Ellen S. Clark Hope Plaza at Washington University. They wanted to create “a place that would allow visitors who are coming here – many for very difficult medical situation – to be transported to a beautiful place that would give them a sense of comfort, peace and hope.”

The Clayco Foundation also is a major contributor to our RVCL Research and Therapeutics Center.

12th Annual Cure CRV Golf Classic

With social distancing and other precautions, the 12th Annual Cure CRV Golf Classic was held by the Morey Family and Friends in Bentonville, Arkansas. All proceeds help fund CRV (RVCL) research at Washington University School of Medicine.We thank the Morey family and friends!!

RVCL Center Family Meeting and Videos

We thank everyone who attended our half day family meeting held Saturday August 26, 2017. This educational meeting summarized new research studies, provided updated information about the recently begun clinical therapeutic trial, and offered advice about genetic testing, prenatal diagnosis and alternative reproductive strategies. You can watch each presentation that was made at the family […]

First clinical trials begun

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The first clinical trial utilizing Aclarubicin for treatment of RVCL commenced December 5, 2016 at Washington University School of Medicine. Two patients initially received infusions of Aclarubicin for four consecutive days with blood work and other testing prior to and at the conclusion of the infusion. The study will be conducted for up to two […]