The Adult Leadership Advisory Board (ALAB) is hosting a Zoom video call on July 10th at 4pm ET. TOPICS The conversation topics include returning to the workplace after COVID-19 and the CRN Virtual Conference (held July 16-18, 2021). To join, click: https://zoom.us/j/2663523786 Meeting ID: 266 352 3786 Here are instructions to help with downloading Zoom. […]
Saturday, September 11th at 4:00pm ET, join the Adult Leadership Advisory Board (ALAB) for a Zoom discussion. TOPICS The month's central topic is COVID-19 and vaccines. This is a fluid discussion and will include the latest CDC announcements, mental and physical well-being, side effects encountered after receiving COVID-19 vaccines, the booster shot available for immunocompromised […]
Saturday, October 2nd at 4:00pm ET, join the Adult Leadership Advisory Board (ALAB) for a Zoom discussion. Chat with others in the cystinosis community about current events, travel and vacation tips, staying safe curing COVID-19, and whatever is on your mind. Please note: this is not just for adults living with cystinosis, everyone interested is […]
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 […]
Diet and exercise will be the next topics of conversation during the Cystinosis Sessions quarterly Zoom call. Join our Adult Leadership Advisory Board Saturday, April 9 at 4:00pm ET. This event is open for all to attend. We hope to see you there! To join, click: https://zoom.us/j/2663523786 Meeting ID: 266 352 3786 Here are instructions […]
On May 7, 2022 we celebrate the 5th Annual Cystinosis Awareness Day. This is an opportunity to educate the world about cystinosis, a rare disease that impacts 2,000 patients and their loved ones. Please join us in commemorating this event. Here are a few suggestions on how to participate: Check out the Cystinosis Warrior Impact […]
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 […]
This summer, Cystinosis Network Europe (CNE) will host an International Conference July 7-10 in Leuven, Belgium. The conference will be segmented into a scientific meeting on July 7 with the family conference running July 8-10. Access details here including: Conference website Registration page Hotel and lodging info Session details click here Questions? Email cystinose@ziggo.nl Call […]
Founding ALAB member, Brian Ensor shares his first-hand experiences with the AstraZeneca Vaccination Study. Join the Zoom call Saturday, July 9 at 4:00pm ET. Agenda items include the AZ study, open discussion and information on the ALAB’s call for new applicants. Calls are held quarterly - we hope you are able to join us! To […]