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DTSTART;TZID=UTC:20260310T190000
DTEND;TZID=UTC:20260310T200000
DTSTAMP:20260318T023108
CREATED:20260116T171637Z
LAST-MODIFIED:20260116T172757Z
UID:5122-1773169200-1773172800@cystinosis.org
SUMMARY:Zoom Night - March
DESCRIPTION:Join us for our March Zoom call\, where we’ll be coming together to talk about kidney transplants. \nFor many in the cystinosis community\, the journey includes at least one (if not multiple) kidney transplants. This open\, supportive conversation will explore life before transplant\, dialysis\, re-transplantation\, and the realities in between. \nWith voices from across the community\, this call offers a chance to learn from one another\, ask questions\, and feel more prepared for what may lie ahead no matter where you are today. \n\nTuesday March 10\n7:00 pm et / 6:00 pm ct / 5:00 pm mt / 4:00 pm pt\nZoom meeting link: https://us06web.zoom.us/j/88412838095\n\nCRN VP of Family Support\, Chelsea Meschke will lead the event. Chelsea’s professional background is in social work and she is the caregiver of two young boys with cystinosis. \n 
URL:https://cystinosis.org/event/zoom-night-march/
LOCATION:Zoom
CATEGORIES:Gatherings/Conferences
ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2026/01/transplant3.png
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20260228
DTEND;VALUE=DATE:20260301
DTSTAMP:20260318T023108
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20260115T193000
DTEND;TZID=UTC:20260115T203000
DTSTAMP:20260318T023108
CREATED:20251008T161439Z
LAST-MODIFIED:20251230T194727Z
UID:5088-1768505400-1768509000@cystinosis.org
SUMMARY:Zoom Night - January
DESCRIPTION:Cystinosis Community Zoom Night\nThursday\, January 15 at 7:30 PM ET\nZoom link: https://us06web.zoom.us/j/88075560653 \nJoin our next Zoom night for an evening of connection and conversation. These calls are open to everyone living with and impacted by cystinosis\, however\, this call will focus on new/newer diagnosed families. It’s a welcoming space to share experiences\, ask questions\, and simply spend time together. \nHosted by Chelsea Meschke\, CRN Vice President of Family Support\, licensed social worker\, and mom to two cystinosis warriors. \nSee you there!
URL:https://cystinosis.org/event/zoom-night-january/
CATEGORIES:Gatherings/Conferences
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20251118T193000
DTEND;TZID=UTC:20251118T203000
DTSTAMP:20260318T023108
CREATED:20251006T155754Z
LAST-MODIFIED:20251006T155754Z
UID:5086-1763494200-1763497800@cystinosis.org
SUMMARY:Zoom night - November
DESCRIPTION:Join our next Zoom night on Tuesday\, November 18th.  \nCalls are open to everyone living with and impacted by cystinosis. It is a chance to connect\, ask questions\, and spend time together.  \n\nNovember 18\n 7:30p ET\nZoom link: https://tinyurl.com/7s2datft \n\nOur host is Chelsea Meschke\, CRN VP of Family Support\, licensed social worker\, and mom to two cystinosis warriors.  \nWe hope to see you there!
URL:https://cystinosis.org/event/zoom-night-november/
LOCATION:Zoom
CATEGORIES:Gatherings/Conferences
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20250916T193000
DTEND;TZID=UTC:20250916T203000
DTSTAMP:20260318T023108
CREATED:20250908T163222Z
LAST-MODIFIED:20250908T163222Z
UID:5073-1758051000-1758054600@cystinosis.org
SUMMARY:Zoom Night - September
DESCRIPTION:We’re keeping it simple with no agenda\, no pressure. This call is open to everyone living with and impacted by cystinosis. It is a chance to connect\, ask questions\, and spend time together.  \n\nSeptember 16\n 7:30p ET\nZoom https://tinyurl.com/yy3v7euh\n\nOur host is Chelsea Meschke\, CRN VP of Family Support\, licensed social worker\, and mom to two cystinosis warriors.  \nWe hope to see you there!
URL:https://cystinosis.org/event/zoom-night-september/
LOCATION:Zoom
CATEGORIES:Gatherings/Conferences
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20250507
DTEND;VALUE=DATE:20250508
DTSTAMP:20260318T023108
CREATED:20250317T152951Z
LAST-MODIFIED:20250505T211333Z
UID:4958-1746576000-1746662399@cystinosis.org
SUMMARY:Cystinosis Awareness Day 2025
DESCRIPTION:Now in it’s eighth year\, Cystinosis Awareness Day was created to shine a spotlight on our rare disease. Spreading information about cystinosis has the power to create a better future for the ~2\,000 diagnosed and those awaiting a diagnosis. How will you celebrate May 7th? \nThere are many ways to show your support. \n\nBe Seen\, Flood It Green. Update your profile picture or simply save and share on your social channels the image provided here (or anything with a green theme) and #cystinosisaware. If you want to take it a step further\, share a fact about cystinosis or share something you wish others knew\n\nAsk Me Anything (AMA). AMA is a powerful way to raise awareness by connecting\, sharing\, and engaging by openly answering questions about a topic\, like cystinosis. Leading up to awareness day we will provide these Q+A opportunities. If you’d like to pose a question or volunteer to provide answers\, email info@cystinosis.org or comment on our socials\n\nDouble Your Donation Days. From May 1–15\, 2025\, every dollar you give to CRN will be matched—fueling twice the support for cystinosis research and programming. Make a tax-deductible contribution today\nVisit our How to Help page for more\n\n 
URL:https://cystinosis.org/event/8th-annual-cystinosis-awareness-day/
CATEGORIES:Gatherings/Conferences
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20250318T190000
DTEND;TZID=UTC:20250318T203000
DTSTAMP:20260318T023108
CREATED:20250305T203850Z
LAST-MODIFIED:20250305T204109Z
UID:4900-1742324400-1742329800@cystinosis.org
SUMMARY:Family Zoom Night - March
DESCRIPTION:Join us this March as Family Zoom Night returns! This welcoming space is open to anyone impacted by cystinosis to share experiences\, ask questions\, and connect with others. Led by our Vice President of Family Support\, Chelsea Meschke. \n\nMarch 18\, 2025\n7:00pm Eastern\nFor Zoom access\, visit https://tinyurl.com/t6zek7b2\n\nEmail Chelsea with any questions at chelseam@cystinosis.org.
URL:https://cystinosis.org/event/family-zoom-night-march/
CATEGORIES:Gatherings/Conferences
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
LOCATION:https://cystinosis.org/event/family-zoom-night-march/
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20250228
DTEND;VALUE=DATE:20250301
DTSTAMP:20260318T023108
CREATED:20250205T165010Z
LAST-MODIFIED:20250311T192303Z
UID:4868-1740700800-1740787199@cystinosis.org
SUMMARY:Rare Disease Day 2025
DESCRIPTION:Rare Disease Day is February 28\, 2025. \nIt is an opportunity to raise awareness and generate change for the 300 million people worldwide living with a rare disease\, their families and carers. Rare Disease Day Official launched a video to support the cause which you can view here. \nThe 2025 theme: More than you can image.  \nWe are asking the cystinosis community to raise your voice and provide a glimpse into what life is like living with a rare disease. Our goal is to fill in the blank below and share with the broader community via social media and/or the CRN newsletter. \n\nLiving with cystinosis is more ___________ than you can imagine. \nSend in your answer along with a photo or create a video expressing your thoughts. Email to info@cystinosis.org.\n\n\nOther ways to be a part of Rare Disease Day 2025 \n\n\n\nUS Residents – EveryLife Foundation for Rare Diseases created a petition to support steady and robust federal agency leadership\, federal biomedical research funding\, and public health agency support.\n\nIf this cause resonates with you\, lend your voice by signing and sharing here.\n\n\nOn February 28\, landmarks around the world will light up in Rare Disease Day colors. If you can\, visit a lit-up landmark near you and take a photo! No landmark nearby? Light up your home with Rare Disease Day colors—purple\, pink\, green\, and blue—and share a photo.\nShare a Fact About Cystinosis. Raise awareness by posting a fact about cystinosis on social media or have a discussion within your circle of family\, friends\, schools\, places of worship\, etc. Not sure what to share? Visit our education section.\nConnect and Advocate. Share your experience with cystinosis in an email\, blog\, or social post. Tag your representatives and ask them to support rare disease research and policies.\nGet Creative. Write a poem\, draw a picture\, or create something that represents your cystinosis journey. Share it or send to us to showcase.\n\n\n\nNo matter how you choose to participate\, your voice makes a difference!
URL:https://cystinosis.org/event/rare-disease-day-2025/
CATEGORIES:Gatherings/Conferences
ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2025/02/FINAL_RDD-2025_Pledge-Card_portrait_English.zip.png
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20250211T183000
DTEND;TZID=UTC:20250211T193000
DTSTAMP:20260318T023108
CREATED:20250205T153509Z
LAST-MODIFIED:20250305T203155Z
UID:4863-1739298600-1739302200@cystinosis.org
SUMMARY:Family Zoom Night - February
DESCRIPTION:CRN Family Zoom Night \nAll are invited to attend a Family Zoom Night on February 11th. Our goal is to provide the cystinosis community with a safe place to share thoughts\, express our feelings\, and come together. Use this link to log into the meeting. We hope to see you there! Questions? Email Chelsea Meschke at chelseam@cystinosis.org.
URL:https://cystinosis.org/event/family-zoom-night/
CATEGORIES:Gatherings/Conferences
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
LOCATION:https://cystinosis.org/event/family-zoom-night/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240722T190000
DTEND;TZID=America/New_York:20240722T203000
DTSTAMP:20260318T023108
CREATED:20240722T134334Z
LAST-MODIFIED:20240722T134426Z
UID:4776-1721674800-1721680200@cystinosis.org
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/
CATEGORIES:Gatherings/Conferences
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240531T074500
DTEND;TZID=UTC:20240531T191500
DTSTAMP:20260318T023108
CREATED:20240220T214443Z
LAST-MODIFIED:20240528T202402Z
UID:4631-1717141500-1717182900@cystinosis.org
SUMMARY:Cystinosis Symposium: A Rare Disease Model for Comprehensive Care
DESCRIPTION:The CRN is hosting an in-person event for healthcare professionals. \nJoin us May 31\, 2024 at The New York Academy of Medicine. \nHealthcare providers with a desire to learn more about comprehensive care in rare disease are encouraged to attend. Registration includes meals\, refreshments and cocktail hour. See the draft agenda and register below to secure your spot now for this pivotal event! See overview below.  \n\n \n \n\nAgenda\n \n\n \n \n\nRegister Today\n\n\n\n \n\nEvent Flyer\n\n\n\n \n\nSpeaker Bios\n\n \n\n\n \nOverview\nReview the latest advances in our understanding of cellular and molecular abnormalities in nephropathic cystinosis\, which have led to three major breakthroughs. We’ll explore the implementation of effective treatments for interrupting disease progression from childhood to adulthood\, and the exciting potential of cutting-edge gene therapies to eradicate this lifelong condition.\n \nDespite these promising developments\, substantial gaps and challenges persist in providing comprehensive care to cystinosis patients and families. Learn how earlier genetic recognition and timely diagnosis can make a difference. Find out how we’re bridging the gap to construct multidisciplinary healthcare teams extending from primary care to specialized support\, including social work\, nutritionists\, educators\, and quality of life navigators.\n \nBe a part of this transformative conference\, one of the first to address these glaring deficiencies in cystinosis care. Together\, we’ll focus on themes that apply to healthcare providers\, educators\, and families\, and work towards disseminating new information and raising awareness within the cystinosis community. Our ultimate goal is to provide an algorithm for more effectively navigating the promising future towards a cure.\n \n \nA special thank you to our sponsors: \n \n \n \n \n \n \n \n \n\n 
URL:https://cystinosis.org/event/cystinosis-symposium-a-rare-disease-model-for-comprehensive-care/
LOCATION:The New York Academy of Medicine\, 1216 5th Ave\, New York\, NY\, 10029\, United States
CATEGORIES:Gatherings/Conferences
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240504T083000
DTEND;TZID=UTC:20240504T163000
DTSTAMP:20260318T023108
CREATED:20240206T161646Z
LAST-MODIFIED:20240428T164006Z
UID:4622-1714811400-1714840200@cystinosis.org
SUMMARY:Cystinosis Awareness Day - Family Meetup
DESCRIPTION:See you in Cincinnati\, Ohio! \nOn May 4th\, we are gathering for an in-person meet-up at the Cincinnati Marriott River Center. Join us for a day of connection\, education\, and celebration commemorating the 7th Annual Cystinosis Awareness Day. Registration is required and is now closed. Please contact Chelsea with questions at chelseam@cystinosis.org. \nDraft Agenda  \n\n8:30a Registration + breakfast provided \n9:00a Welcome \n9:30a Family introductions \n10:15a Dr Elizabeth Ames\, University of Michigan: Genetics in Cystinosis + Q&A \n11:15a Group photo \n11:30a Our Mental Health\, with Chelsea Meschke\, LMSW\n12:00p Lunch provided \n1:00p Updates from CRN President\, Jonathan Dicks \n1:30p Goose chase activity \n2:30p Patient Support session \n3:45p Closing remarks + departures \n\nIf you would like to stay at the venue overnight\, discounted rates are secured through this booking link.  \nWe hope to see you there! A special thank you our sponsors: \n \n                   
URL:https://cystinosis.org/event/cystinosis-awareness-day-family-meetup/
LOCATION:Cincinnati Marriott RiverCenter\, 10 W Rivercenter Blvd\, Covington\, Kentucky\, 41011\, United States
CATEGORIES:Gatherings/Conferences
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20230713
DTEND;VALUE=DATE:20230716
DTSTAMP:20260318T023108
CREATED:20220810T155023Z
LAST-MODIFIED:20230227T222541Z
UID:3938-1689206400-1689465599@cystinosis.org
SUMMARY:2023 Family Conference - Nashville
DESCRIPTION:The CRN Family Conference is back…and in-person for the summer of 2023. Join us July 13 – July 15 in Nashville\, Tennessee. The event will take place at the Nashville Marriott at Vanderbilt University. \nFor agenda\, travel scholarships and more details\, click here. \nWe look forward to seeing you there!
URL:https://cystinosis.org/event/2023-family-conference-dates-location/
LOCATION:Nashville Marriott at Vanderbilt University\, 2555 West End Avenue\, Nashville\, TN\, 37203\, United States
CATEGORIES:Gatherings/Conferences
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20230507
DTEND;VALUE=DATE:20230508
DTSTAMP:20260318T023108
CREATED:20221014T141524Z
LAST-MODIFIED:20230504T191129Z
UID:4060-1683417600-1683503999@cystinosis.org
SUMMARY:Cystinosis Awareness Day
DESCRIPTION: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\, we will feature physicians and rare partner organizations who’ve teamed up to amplify our message. \nHow will you spread the word? Here are some ideas to get you started: \n\n“One Thing” Campaign. Share the one thing you wish everyone knew about cystinosis\nNominate yourself or a fellow cystinosis warrior for the Cystinosis Warrior Impact Program\nShare your cystinosis odyssey or pass along information from our website\nVolunteer for cystinosis research studies\nStart a cystinosis fundraiser. Facebook and Instagram make this easy or contact Jonathan Dicks on how to host an event (jdicks@cystinosis.org)\nVisit our general list on How to Help\nTo donate\, click here\n\nIf you would like to volunteer to become and event ambassador\, please email info@cystinosis.org.
URL:https://cystinosis.org/event/cystinosis-awareness-day/
CATEGORIES:Fundraising Events
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230309T100000
DTEND;TZID=America/New_York:20230309T110000
DTSTAMP:20260318T023108
CREATED:20230228T192801Z
LAST-MODIFIED:20230228T192801Z
UID:4323-1678356000-1678359600@cystinosis.org
SUMMARY:Informational Q&A: Cystinosis QoL Study
DESCRIPTION:We will host an informational session on the CRN funded study “Development of a patient-reported outcome to measure the health-related quality of life of children and adolescents with cystinosis: QUALIFY-US” \nThe research team will be available to explain the project and what participation would involve. Attendees will have the opportunity to ask questions. \nMarch 9\, 2023  \n10:00 – 11:00 am Eastern \nJoin the Zoom meeting using this link  \nIn partnership with the Department of Medical Psychology at Germany’s University Medical Center in Hamburg-Eppendorf\, Dr. Julia Quitmann and team are actively recruiting participants for online interviews. The study focuses on health-related quality of life (HrQoL) and aims to learn more about the challenges and management of the disease and the needs of patients living with cystinosis. \nBoth cystinosis patients and parents may be eligible. Additional information is available here or contact Isabell Suck or Stefanie Witt at quality-of-life@uke.de.
URL:https://cystinosis.org/event/informational-qa-cystinosis-qol-study/
CATEGORIES:Fundraising Events
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20220507
DTEND;VALUE=DATE:20220508
DTSTAMP:20260318T023108
CREATED:20220330T152849Z
LAST-MODIFIED:20220503T141259Z
UID:3693-1651881600-1651967999@cystinosis.org
SUMMARY:5th Annual Cystinosis Awareness Day
DESCRIPTION:On May 7\, 2022 we celebrate the 5th Annual Cystinosis Awareness Day. \nThis 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: \n\nCheck out the Cystinosis Warrior Impact Program. A brand new initiative aimed at impacting each and every person living with cystinosis.\nAwareness Day Giveaway. As a thank you for growing with the CRN\, we are sending plantable awareness ribbons loaded with wildflower seeds. Request yours here.\nAdvocate. Share a snapshot or your perspective on living cystinosis with the people around you; in person or online with #cystinosisaware.\nResearch. Volunteer for research studies or make a donation.\nFor more information or additional ideas\, email info@cystinosis.org.\n\nWe appreciate your support!
URL:https://cystinosis.org/event/5th-annual-cystinosis-awareness-day/
CATEGORIES:Gatherings/Conferences
ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2022/03/CAD_dateheader.png
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20210716T180000
DTEND;TZID=UTC:20210718T154500
DTSTAMP:20260318T023108
CREATED:20200415T003642Z
LAST-MODIFIED:20210804T181608Z
UID:2402-1626458400-1626623100@cystinosis.org
SUMMARY:2021 CRN Summer Online Conference
DESCRIPTION:Our biennial conference took place – virtually – July 16 – July 18\, 2021. \nWith the safety and health of our community in mind\, we shifted from an in-person event to a 100% online conference series. We are focused on providing an educational\, supportive\, engaging and fun experience. The beat goes on! \nThe conference is currently closed. However\, select sessions are available now on our YouTube channel and you can review the agenda here. \nOur original 2021 conference location of Nashville\, Tennessee will now host our face-to-face celebration in 2023. We hope to host more in person regional gatherings in 2022. Please be sure to check back on our website and social outlets for future announcements.
URL:https://cystinosis.org/event/announcement-2021-family-conference/
CATEGORIES:Gatherings/Conferences
ATTACH;FMTTYPE=image/jpeg:https://cystinosis.org/wp-content/uploads/2020/04/TheBeatGoesOn_Virtual.jpg
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20210507
DTEND;VALUE=DATE:20210508
DTSTAMP:20260318T023108
CREATED:20210209T051945Z
LAST-MODIFIED:20210429T233752Z
UID:2957-1620345600-1620431999@cystinosis.org
SUMMARY:Cystinosis Awareness Day - 2021
DESCRIPTION:Welcome to the 4th Annual Cystinosis Awareness Day! \nStarted in 2018\, Cystinosis Awareness Day was created to bring attention to our rare disease. Educating the general public and medical communities about cystinosis has the power to create a better future for the ~2\,000 diagnosed and those awaiting a diagnosis. \nSince it’s inception\, Cystinosis Awareness Day has become a highly anticipated event. Each year we uncover ways to promote understanding within our personal networks and beyond. Cystinosis Awareness Day has also proven to be a successful fundraising initiative. \nWe’d appreciate your help this May 7th. Please consider participating in one or more of the ways outlined below. We are small but together we are mighty! \nRaise Funds  \nYour donations fuel educational and support programming and cystinosis research. We are currently funding cystinosis studies over a range of areas. This includes male reproduction\, cognitive function\, measuring the effectiveness of cystine therapy\, and more. Visit our Grants Awarded page to learn more. \nFor the 4th Annual Cystinosis Awareness Day\, your hard earned dollars will go 4x as far. We’ve secured donors ready to match your contribution! For example: a $5 donation turns into $20\, $57 becomes $228\, or $100 translates to $400. Donations will be matched up to $5\,700 (that’s $22\,800 for our community!) Click here to donate. \nShow your love for the Miles for Moose 5.7 mile walk. Moose is a growing little boy with an amazing “nana” who has been putting together this fundraising event in his honor prior to the COVID-19 pandemic. Show your support by registering here. \n \nRaise Awareness  \nLet’s eliminate those misconceptions about cystinosis. This is the time to break the stigmas and bust down any myths you may have encountered. \nMYTH: Cystinosis journeys are all the same. \nMYTH: A kidney transplant will cure cystinosis. \nMYTH: I am defined by my disease. \nIf you are ready to help this myth busting mission\, start sharing today. This can be as small as a conversation with yourself/a loved one or a bit larger like sharing with your network of social media followers using #cystinosisaware. Follow the Cystinosis Research Network for ideas and ways to have your “myth” featured for Cystinosis Awareness Day. (Links to CRN social channels found in the icons at the bottom of the page) \nThe Adult Leadership Advisory Board\, our umbrella group with a membership made entirely of adults living with cystinosis\, has launched a “Succeeding with Cystinosis” campaign for Cystinosis Awareness Day. They’ve challenged the community to search for the successes and failures we’ve experienced within the last year and to share with the group by emailing Sara at shealy194@hotmail.com. \nThank you for continuing to fight for our cystinosis warriors\, this May 7th and every day! \n 
URL:https://cystinosis.org/event/cystinosis-awareness-day-2021/
CATEGORIES:Fundraising Events
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ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20210228
DTEND;VALUE=DATE:20210301
DTSTAMP:20260318T023108
CREATED:20210209T045540Z
LAST-MODIFIED:20210218T035719Z
UID:2950-1614470400-1614556799@cystinosis.org
SUMMARY:Rare Disease Day 2021
DESCRIPTION: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 is many. Rare is strong. Rare is proud. \nThis theme is our call to action. Let’s elevate our voices as a united rare disease community.\nLeading up to Rare Disease Day on February 28th\, we invite each person impacted by rare disease to share their #RareIn60. \nCreate a 60-second video\,\n60-second photo collage or\n60-word summary of what you’d like others to know about cystinosis/the rare disease that has affected your life. \nYour message can be geared towards friends and family\, colleagues\, students\, health care professionals\, etc. \nTo participate: \n– Create your #RareIn60\n– Post online the week of February 22 (and/or send directly to cjohnstone@cystinosis.org)\n– Use #RareIn60\n– Let us know you’ve joined the campaign! \nRare Disease Day Raffle \nThe Adult Leadership Advisory Board (ALAB) has launched a fundraiser in honor of Rare Disease Day. Every $5 donation received is an entry to win a $100 Amazon gift card and some CRN swag. Enter for your chance to win by selecting “ALAB – Rare Disease Day” from the donate page drop down. The winner will be drawn on March 1. Good luck!
URL:https://cystinosis.org/event/rare-disease-day-2021/
CATEGORIES:Fundraising Events
ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2021/02/Twitter-Banner-1500x500-1.png
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
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