Rare Disease Day 2021
The goal of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives. This year's Rare Disease Day theme is : Rare […]
4 events found.
CRN
Events
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Cystinosis Sessions: August Video Call
The Adult Leadership Advisory Board (ALAB) invites you to join the conversation on August 7th at 4pm ET. The video call with be hosted via Zoom. TOPICS ALAB members will lead a discussion about 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 […]
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CRN Golf Tournament: Myrtle Beach
FeaturedMyrtle Beach National Golf Club 4900 National Drive, Myrtle Beach, SC, United StatesThe 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 […]
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Cystinosis Sessions: September Video Call
FeaturedSaturday, 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 […]
