Welcome to the 4th Annual Cystinosis Awareness Day! Started in 2018, Cystinosis Awareness Day was created to bring attention to our rare disease. Educating the general public and medical communities about cystinosis has the power to create a better future for the ~2,000 diagnosed and those awaiting a diagnosis. Since it's inception, Cystinosis Awareness Day […]
The Myrtle Beach National Golf Club and Gail Potts are hosting a golf tournament benefitting the Cystinosis Research Network on Saturday, August 14th. Click here to register today or make a donation through this website.
Saturday, January 8th at 4:00pm ET, join the Adult Leadership Advisory Board (ALAB). Discuss mental toughness and ways to stay positive with others within the cystinosis community. Please note: this is not just for adults living with cystinosis, everyone interested is invited to attend. To join, click: https://zoom.us/j/2663523786 Meeting ID: 266 352 3786 Here are […]
Join The Hilltop and Dicks Family for a fundraiser to benefit sweet Elle. Elle was diagnosed with cystinosis and her family, friends and community have supported her every step of the way. Her father is Jon Dicks, President of the Cystinosis Research Network. You can read about the first few years of her journey as […]
February 28th marks the 12th annual Rare Disease Day (RDD). Observed on the rarest day of the year, the global event campaigns for equity for the over 7,000 rare diseases currently identified. Among those rare diseases is cystinosis. Cystinosis is a genetic, lysosomal storage disorder where unusual cystine accumulation occurs in every cell in the […]
Gail Potts and her South Carolina team are back at it! After a successful inaugural event last summer, Gail continues to honor her daughter Deanna’s legacy with a golf fundraiser to benefit the Cystinosis Research Network (CRN). Proceeds from the event will support research, family support and education for those impacted by cystinosis. This […]
February 28, 2023 is Rare Disease Day. A movement created by Eurordis, Rare Disease Day unites an international community and promotes progress for all those affected. Rare Disease Day raises awareness for the 300 million people living with rare disease around the world and their families and carers; including our 2,000 cystinosis warriors. Here are […]
We will host an informational session on the CRN funded study "Development of a patient-reported outcome to measure the health-related quality of life of children and adolescents with cystinosis: QUALIFY-US" The research team will be available to explain the project and what participation would involve. Attendees will have the opportunity to ask questions. March 9, […]
On May 7, 2023 the cystinosis community will come together in honor of Cystinosis Awareness Day (CAD). Now in it's sixth year, CAD is a global effort to raise funds and educate the general population about this disease. This year's campaign will include testimonials from cystinosis warriors, caregivers/family members and international cystinosis organizations. In addition, […]
By taking part in Rare Disease Day you help provide a greater understanding and acceptance of cystinosis and living with a rare disease. You may even find speaking out about cystinosis empowering. Either way, we thank you for being a part of our community and considering taking part in this important day. Here are a […]