Cystinosis Families Together Again Thursday, March 30 - Saturday, April 1, 2023
VEA Newport Beach Resort, 900 Newport Center Drive, Newport Beach, CA 92660
There is nothing more inspiring and hopeful than a gathering of cystinosis families and researchers working to find better treatments and a cure for cystinosis. The Day of Hope Conference was everything the weekend promised to be and more!
More than 250 people gathered to celebrate 20 years of CRF’s success. When the CRF community comes together, positive things happen. We renewed our commitment to each other and to the CRF research program. We know that in order to accomplish our goal of finding better treatments and a cure, we must prioritize research and continue to fund research projects that will improve the quality of life for those with cystinosis.
Everyone thoroughly enjoyed the presentations made by CRF-funded researchers who updated us on their research projects. The updates left us feeling optimistic that we are on the brink of new discoveries and treatments for cystinosis. Some conference sessions were recorded and are now available for viewing. Just click on the topic title to view the presentation. Unfortunately, we experienced some technical difficulties so not all presentations were successfully recorded, however, a copy of the research abstract is available for download when the box is clicked.
Day of Hope 2023 Photo Gallery
Clinics and Information
We encourage you to download information about each of the clinics represented at the conference and contact the representatives for further information.
Cure Cystinosis International Registry (CCIR): Volunteers Needed
Join the 130 families from around the world who and enroll in the patient registry. When you enroll you are helping the research community learn more about cystinosis so they can target research that will lead to better treatments and a cure. Do your part and register today!
Confocal Clinic: Volunteers Needed for Skin Imaging
Dr. Cherqui is conducting a research study to monitor the natural history of cystinosis and do skin confocal imaging. If you have questions and/or are interested in participating, please contact Imama Ahmed (i1ahmed@health.ucsd.edu) or Anne Sawyers (amsawyers@health.ucsd.edu).
Muscle Wasting: Volunteers Needed for blood draws, height & weight measurements
Dr. Mak and Dr. Cherqui are conducting a research study to monitor the natural history of cystinosis and to draw blood. If you have any questions and/or are interested in participating, please contact Kristin Zeeb (kzeeb@health.ucsd.edu) or Anne Sawyers (amsawyers@health.ucsd.edu).
Distal Myopathy and Dysphagia: Volunteers Needed to sign up (actual trial is in Boston)
Email Natalie Grant if you would like to participate at ngrant@mgh.harvard.edu
