10 events found.
Events
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Sussex Central High School 26026 Patriots Way, Georgetown, DE, United States -
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2019 CRN Family Conference
FeaturedHilton at Penns Landing 201 South Christopher Columbus Blvd, Philadelphia, PARing in the future with us at the 2019 Family Conference. The weekend is filled with research updates from clinicians and international cystinosis organizations, opportunities to meet and renew friendships, participate in studies, and interact with expert health care professionals. Browse the draft agenda here. The 2019 Family Conference is July 18 – 20, 2019 […]
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Seed-Balls for Cystinosis
(Left) Carter'(s last boat ride before G-J tube insertion. (Right) Look who turned 2! Over the last few years, Carter's family has taken a strong interest in monarch butterflies. Post diagnosis, Grandmom (Carrie) knew she wanted to create an event to honor his resilient spirit. To celebrate Carter's second birthday and new found love for […]
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Global Genes: Rare Patient Advocacy Summit
Sheraton San Diego Hotel & Marina 1380 Harbor Island Drive, San Diego, CA, United StatesOn behalf of the cystinosis community, CRN advocates will attend this rare disease summit to absorb information on the latest therapies and research and participate in collaborative workshops. Global Genes has more information on their website and FAQs page. "As the largest gathering of rare disease patients, caregivers, thought leaders and other rare disease stakeholders […]
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Community Advisory Board (CAB) Meeting
The Community Advisory Board (CAB) was created to establish a worldwide cystinosis committee under the mentorship of Eurordis, the representative body for rare diseases in Europe. The key objective of CABs is to engage with pharmaceutical companies in order to bring the patient perspective to clinical trials and other areas. Members of the CAB receive […]
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American Society of Nephrology – Kidney Week
Walter E. Washington Convention Center, Washington, DC, USA 801 Mt Vernon Pl NW, Washington, United StatesCRN will join the American Society for Nephrology (ASN) and more than 13,000 other kidney professionals from across the globe at Kidney Week 2019 in Washington, DC. The world’s premier […]
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Giving Tuesday
The CRN is a proud participant in Giving Tuesday - a global movement encouraging people to "do good." This is our fifth year celebrating the event that has inspired millions […]
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Podcast: Staying Positive while living with Cystinosis
Welcome to our podcast series - Cystinosis Rare: A Journey into the Unknown. Lead by the Adult Leadership Advisory Board (ALAB), this series will focus on issues specific to our rare disease. The initial podcast episode launches on Rare Disease Day - February 29, 2020. This episode focuses on positive aspects and inspiring stories of […]
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Cystinosis Sessions: Coronavirus, Medication
Join the first video conference session created by the Adult Leadership Advisory Board - Saturday, March 21 at 4pm ET.
