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X-ORIGINAL-URL:https://cystinosis.org
X-WR-CALDESC:Events for Cystinosis Research Network
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DTSTART:20250101T000000
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DTSTART;VALUE=DATE:20260228
DTEND;VALUE=DATE:20260301
DTSTAMP:20260403T182029
CREATED:20250904T142601Z
LAST-MODIFIED:20260228T140045Z
UID:5069-1772236800-1772323199@cystinosis.org
SUMMARY:Rare Disease Day 2026
DESCRIPTION:Taking place on the last day of February\, Rare Disease Day is a global movement which aims to promote equity in social opportunities\, healthcare\, and access to diagnosis and therapies for individuals living with rare diseases. \nIf you are looking for cystinosis awareness opportunities\, you’ve come to the right place. Here are some ideas: \n\nShare Your Story\n\nThrough partnership with Everylife Foundation\, share your experience focusing on this question: How has rare disease has affected your and your family’s lives? Submit online here. \n\nFaces of Rare\n\nSimilar to the option above\, join NORD in celebrating the “Faces of Rare.” Providing a photo and a small glimpse into your rare disease story on their website. \n\nRare Disease Week in Washington\, D.C. \n\nAdvocate during Rare Disease Week on Capitol Hill (email info@cystinosis.org if interested in sponsorship) \n\nLocal Rare Disease Day Events\n\nCan’t make it to Washington\, D.C.? Do a quick search for Rare Disease Day events near you. Check out NORD’s list here. \n\nCall for Rare Youth Leaders\n\nTeens and young adults looking to take a rare leadership role\, contact the CRN before March 8th. Opportunities open to those with a personal connection to rare ages 18-30. Email info@cystinosis.org \n\nWhy should I care about Rare Disease Day?\n\nLearn about Rare Disease Day and sharing the importance of this event with friends\, family and your extended networks. Access the official Rare Disease Day info pack and video today
URL:https://cystinosis.org/event/rare-disease-day-2026/
CATEGORIES:Gatherings/Conferences
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
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