education

Name: Cystinosis Awareness Day
Start: 2023-05-07T00:00:00+00:00
End: 2023-05-07T23:59:59+00:00

September 2019
September 18, 2019 - September 20, 2019

Global Genes: Rare Patient Advocacy Summit

Sheraton San Diego Hotel & Marina 1380 Harbor Island Drive, San Diego, CA, United States

On 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 […]
November 2019
November 5, 2019 - November 10, 2019

American Society of Nephrology – Kidney Week

Walter E. Washington Convention Center, Washington, DC, USA 801 Mt Vernon Pl NW, Washington, United States

CRN 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 nephrology meeting, Kidney Week provides participants exciting and challenging opportunities to exchange knowledge, learn the latest scientific and medical advances, and listen to engaging and […]
December 2019
December 3, 2019

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 to give, collaborate, and celebrate generosity. The Tuesday after U.S. Thanksgiving has been designated as the global day for giving back. It was created in […]
May 2020
May 2, 2020 @ 4:00 pm - 5:30 pm

Live Video Conference: Dependence, Education & Employment

Join the LIVE video conference session on May 2nd!
April 2021
April 30, 2021 - June 4, 2021

CRN at 2021 Virtual PAS

The Pediatric Academic Societies (PAS) connects thousands of pediatricians and other health care providers worldwide. This international gathering, delivered virtually in 2021, offers opportunities for a global audience of physician-scientists, clinicians, and educators to share research, explore new ideas, build career opportunities, and collaborate on future projects. Presentations cover issues of interest to generalists as […]
July 2021
Featured July 16, 2021 @ 6:00 pm - July 18, 2021 @ 3:45 pm

2021 CRN Summer Online Conference

Mark your calendars for the 2021 CRN Family Conference!
May 2022
Featured May 7, 2022

5th Annual Cystinosis Awareness Day

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 […]
June 2022
Featured June 18, 2022 @ 9:00 am - 2:00 pm

2nd Annual SC Golf Fundraiser

Wild Wing Avocet Golf Course 1000 Wild Wing Boulevard, Conway, South Carolina

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 […]

$65
May 2023
May 7, 2023

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, […]

September 2019

November 2019

December 2019

May 2020

April 2021

July 2021

May 2022

June 2022

May 2023