Cystaran Eye Drops Virtual Town Hall
On Wednesday April 27, Leadiant Biosciences and AllianceRx Walgreens Prime invite the cystinosis community to attend a virtual Town Hall. With Cystaran eye drops back in stock, the discussion agenda […]
10 events found.
Events
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5th Annual Cystinosis Awareness Day
FeaturedOn 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 […]
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2nd Annual SC Golf Fundraiser
FeaturedWild Wing Avocet Golf Course 1000 Wild Wing Boulevard, Conway, South CarolinaGail 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 […]
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CNE International Conference
FeaturedMTC1 Maria-Theresiacollege Sint-Michielsstraat 6, 3000 Leuven, BelgiumThis 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 […]
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Cystinosis Sessions: July Video 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 […]
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Rare Disease Day 2023
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 […]
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Informational Q&A: Cystinosis QoL Study
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, […]
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Cystinosis Awareness Day
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, […]
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2023 Family Conference – Nashville
Nashville Marriott at Vanderbilt University 2555 West End Avenue, Nashville, TN, United StatesThe CRN Family Conference is back...and in-person for the summer of 2023. Join us July 13 - July 15 in Nashville, Tennessee. The event will take place at the Nashville Marriott at Vanderbilt University. For agenda, travel scholarships and more details, click here. We look forward to seeing you there!
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Halloween Trivia Night
Test your knowledge of everything Halloween. ALAB members are hosting a free, online trivia night. October 29th at 8:30pm ET Jump on the Zoom call for a chance to win a $25 gift card. Open to teens and adults - use this link at the time of the event; no registration necessary. We hope to […]
