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SUMMARY:School Prep + Cystinosis (virtual)
DESCRIPTION:A new school year is almost here. If you are preparing to send a child with cystinosis into the classroom\, this meeting is for you!\nJoin the Zoom call Monday\, July 22 at 7pm ET.We will discuss– Individual Education Plans (IEPs) – 504 plans – Medication schedules– Overall support strategies …and more\n\nNo registration needed. Use this link when it is time for the meeting.\nWe hope to see you Monday night for an engaging conversation.
URL:https://cystinosis.org/event/school-prep-cystinosis-virtual/
LOCATION:FL
CATEGORIES:Gatherings/Conferences
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
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DTSTART;VALUE=DATE:20240725
DTEND;VALUE=DATE:20240728
DTSTAMP:20260406T150207
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LAST-MODIFIED:20240308T195134Z
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SUMMARY:Cystinosis Network Europe International Conference
DESCRIPTION:Registration for the Cystinosis Network Europe (CNE) International Conference\, hosted by Cystinosis Foundation UK in Manchester in July are now open!\nRegister here.\nScientific meeting agenda\nFamily meeting agenda\n\nCNE is offering assistance to families who will find the financial burden of travelling very high. We are looking forward to an amazing family and community event in Manchester in the summer and hope to see you and your families there!\n\nFor questions\, contact Denise Dunn at denise.dunne@cystinosis.ie.
URL:https://cystinosis.org/event/cystinosis-network-europe-international-conference/
LOCATION:Manchester\, England\, Manchester\, United Kingdom
CATEGORIES:Gatherings/Conferences
ORGANIZER;CN="Cystinosis Network Europe":MAILTO:denise.dunne@cystinosis.ie
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DTSTART;TZID=UTC:20240729T150000
DTEND;TZID=UTC:20240729T160000
DTSTAMP:20260406T150207
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LAST-MODIFIED:20240716T141813Z
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SUMMARY:Adult July Meetup - Disability and Cystinosis
DESCRIPTION:For Disability Pride Month\, the Adult Leadership Advisory Board is hosting a Zoom call to discuss living with cystinosis and disability. Their special guest is Hannah Creel\, a cystinosis warrior\, advocate and rare disease ally. \nRegistration is free to attend the event on July 29 at 3pm ET/2pm CT.
URL:https://cystinosis.org/event/adult-july-meetup-disability-and-cystinosis/
LOCATION:Virtual
CATEGORIES:Gatherings/Conferences
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