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X-WR-CALNAME:Cystinosis Research Network
X-ORIGINAL-URL:https://cystinosis.org
X-WR-CALDESC:Events for Cystinosis Research Network
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DTSTART:20180101T000000
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20230228
DTEND;VALUE=DATE:20230301
DTSTAMP:20230228T201058Z
CREATED:20221014T140812Z
LAST-MODIFIED:20230228T201058Z
UID:4057-1677542400-1677628799@cystinosis.org
SUMMARY:Rare Disease Day 2023
DESCRIPTION:February 28\, 2023 is Rare Disease Day.\nA 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. \nHere are some resources and ways to participate in Rare Disease Day 2023: \nVirtual Meetings. Join the discussion\, “Intersections with Rare Diseases – A patient focused event” February 27\, 9:00 am – 4:45 pm ET. Rare Disease Week on Capitol Hill activities through EveryLife Foundation. In the UK: Improving Care Coordination for Rare on March 2\, 11:00 am – 13:00 pm GMT. \nShare your rare. Take a selfie using Rare Disease International’s virtual photo booth\, share your cystinosis story with us at info@cystinosis.org or visit rarediseaseday.org/share-your-story. Need inspiration? Read about Reza’s cystinosis story here. \nUse your voice. Provide feedback to the NORD/Rare Disease Diversity Coalition (RDDC) survey to be heard\, included\, and counted. This national survey of underrepresented rare disease patients will help us better advocate for equal access to care for all people living with rare diseases. \nLight Up for Rare by illuminating your home or a monument in your city. \nFind an event in your area via the Rare Action Network. \nRare Disease Basics. Learn and share the basics of your rare disease with this intro to cystinosis video and our Cystinosis 101 page. \nRare Equity Guide; How can we achieve equity for people living with a rare disease? Tune in to the Understanding the Emotional Health of Rare Disease Patients session from Global Genes. \nResearch Participation. This cystinosis study can be completed from home. Have questions? Join this live Q&A event with researchers. \nGuides for Rare Adults. Download the Rare Disease Employment Toolkit and Living rare: Family Planning Toolkit. \nRare Programming. Take advantage of the special programming offered by your patient advocacy organization. \nSelf care. It can be easy for rare patients and caregivers to over look their mental health. If you are in crisis\, please reach out. \nMake a donation. Donate time by volunteering with the CRN [info@cystinosis.org] or support our mission with a monetary contribution.
URL:https://cystinosis.org/event/rare-disease-day-2023/
CATEGORIES:Fundraising Events
ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2022/10/RDD_final.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20190918
DTEND;VALUE=DATE:20190921
DTSTAMP:20190904T171910Z
CREATED:20190904T170703Z
LAST-MODIFIED:20190904T171910Z
UID:1676-1568764800-1569023999@cystinosis.org
SUMMARY:Global Genes: Rare Patient Advocacy Summit
DESCRIPTION: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. \nGlobal 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 in the world\, the RARE Patient Advocacy Summit is an unparalleled opportunity to forge meaningful connections with other rare advocates and take home actionable strategies and tools to accelerate change.” \n \nAbove: Clinton Moore (left) and Katie Morrison (right) at the 2018 Rare Patient Advocacy Summit. \n  \n  \n 
URL:https://cystinosis.org/event/global-genes-rare-patient-advocacy-summit/
LOCATION:Sheraton San Diego Hotel & Marina\, 1380 Harbor Island Drive\, San Diego\, CA\, 92101\, United States
CATEGORIES:Gatherings/Conferences
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