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DTSTART;VALUE=DATE:20250507
DTEND;VALUE=DATE:20250508
DTSTAMP:20260403T224756
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/
LOCATION:FL
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:20260403T224756
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/
LOCATION:https://cystinosis.org/event/family-zoom-night-march/
CATEGORIES:Gatherings/Conferences
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20250228
DTEND;VALUE=DATE:20250301
DTSTAMP:20260403T224756
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/
LOCATION:FL
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:20260403T224756
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/
LOCATION:https://cystinosis.org/event/family-zoom-night/
CATEGORIES:Gatherings/Conferences
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240826T180000
DTEND;TZID=UTC:20240826T190000
DTSTAMP:20260403T224756
CREATED:20240819T210516Z
LAST-MODIFIED:20240819T210516Z
UID:4788-1724695200-1724698800@cystinosis.org
SUMMARY:Adults August Meetup
DESCRIPTION:The Adult Leadership Advisory Board invites you to join their August meetup on Monday the 26th at 6p ET. This month’s topic: Mental Health – Trauma. \nSpecial guest is Kerry Heckman\, a licensed therapist from Seattle\, Washington. Register here to take part in the discussion.
URL:https://cystinosis.org/event/adults-august-meetup/
LOCATION:FL
CATEGORIES:Gatherings/Conferences
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240729T150000
DTEND;TZID=UTC:20240729T160000
DTSTAMP:20260403T224756
CREATED:20240716T141813Z
LAST-MODIFIED:20240716T141813Z
UID:4772-1722265200-1722268800@cystinosis.org
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
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20240725
DTEND;VALUE=DATE:20240728
DTSTAMP:20260403T224756
CREATED:20240308T192006Z
LAST-MODIFIED:20240308T195134Z
UID:4644-1721865600-1722124799@cystinosis.org
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240722T190000
DTEND;TZID=America/New_York:20240722T203000
DTSTAMP:20260403T224756
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/
LOCATION:FL
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:20260403T224756
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:20240519T190000
DTEND;TZID=UTC:20240519T200000
DTSTAMP:20260403T224756
CREATED:20240515T204119Z
LAST-MODIFIED:20240515T204119Z
UID:4763-1716145200-1716148800@cystinosis.org
SUMMARY:Adult May Meetup - Mental Wellness
DESCRIPTION:May is Mental Health Awareness Month. Join the Adult Leadership Advisory Board to discuss the importance of mental wellness. Special guests include AJ Altman (Music Therapist) and Amanda Harmon (PhD college professor).\n\n\n\nFor the Zoom link\, please register for free using this link.\nEvent is May 19 at 7p ET.\n\n\n\nWe hope to see you there!
URL:https://cystinosis.org/event/adult-may-meetup-mental-wellness/
LOCATION:FL
CATEGORIES:Gatherings/Conferences
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20240507
DTEND;VALUE=DATE:20240508
DTSTAMP:20260403T224756
CREATED:20230919T145719Z
LAST-MODIFIED:20240420T023808Z
UID:4548-1715040000-1715126399@cystinosis.org
SUMMARY:Cystinosis Awareness Day
DESCRIPTION:Join us on and leading up to May 7th to promote cystinosis awareness\, education and fundraising efforts. \nOur 7th annual awareness day campaign focuses on #CystinosisStereotypes with 3 ways go participate: share\, create and/or donate. \n\nShare. \n\n\nEach day our community wakes up and challenges cystinosis stereotypes. Over the next few weeks we will be releasing examples from global cystinosis warriors calling out those stereotypes through videos\, photos and personal perspectives. Please share to help shatter #CystinosisStereotypes \n\n\nCreate.  \n\n\nMake your own video/post in response to the questions: What cystinosis stereotype are you breaking? Which do you wish to break? Once created\, share with your network with #CystinosisStereotypes \n\n\nDonate.  \n\n\nYour Cystinosis Awareness Day donations will be TRIPLED. $10 turns into $30\, $100 into $300\, and so on. Support cystinosis research\, family assistance and educational programming today! The match will be capped at $15\,000. \n\nYou may also be interested in: \n\nCincinnati\, OH Family Meetup There will be an in person event for those regional to Cincinnati\, Ohio on May 4th. Registration is complimentary and you can learn more here\nFor Your Healthcare Team The CRN is hosting an event at The New York Academy of Medicine to discuss comprehensive care in cystinosis. The May 31st symposium is for healthcare professionals. Please share the link with your care teams – they don’t want to miss this information-packed agenda\nSpecial Programs Check out our robust support programming which includes the Cystinosis Warrior Impact Program. Apply yourself or nominate a loved one living with cystinosis\nAdult Leadership Advisory Board Open to adults living with cystinosis 18+ years old\, see the group’s current initiatives and apply to be a member here\nVolunteer for Research Be a part of important advancements in the world of cystinosis. We are currently recruiting for the Quality of Life study and the full list is available on our webpage\n\nThank you to our sponsors: \n \n \n 
URL:https://cystinosis.org/event/cystinosis-awareness-day-2/
LOCATION:FL
CATEGORIES:Fundraising Events
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240504T083000
DTEND;TZID=UTC:20240504T163000
DTSTAMP:20260403T224756
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;TZID=UTC:20240428T190000
DTEND;TZID=UTC:20240428T200000
DTSTAMP:20260403T224756
CREATED:20240320T175153Z
LAST-MODIFIED:20240417T132804Z
UID:4695-1714330800-1714334400@cystinosis.org
SUMMARY:Family Planning with Cystinosis
DESCRIPTION:  \nThe Adult Leadership Advisory Board introduces the topic of Family Planning with Cystinosis to their monthly meetup series. \nAre you an adult with cystinosis thinking about having a family? Not sure if you want to adopt or pursue a traditional birth? Join the Zoom conversation to hear from adults with cystinosis who can help answer some of your questions. Special guests include Briana Dundon\, Bryan and Alex Stout\, and Emily Mello. \nClick here to complete the simple event registration. Event will be held virtually on April 28th 6pm CT/ 7pm ET.  We hope to see you there! \n 
URL:https://cystinosis.org/event/family-planning-with-cystinosis/
LOCATION:Virtual
CATEGORIES:Gatherings/Conferences
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20240229
DTEND;VALUE=DATE:20240301
DTSTAMP:20260403T224756
CREATED:20230919T145420Z
LAST-MODIFIED:20240208T215903Z
UID:4546-1709164800-1709251199@cystinosis.org
SUMMARY:Rare Disease Day 2024
DESCRIPTION:By taking part in Rare Disease Day you help provide a greater understanding and acceptance of cystinosis and living with a rare disease. You may even find speaking out about cystinosis empowering. Either way\, we thank you for being a part of our community and considering taking part in this important day. Here are a few examples of how to get involved: \n\nShare your story with the official Rare Disease Day sponosors here\nSign up for Rare Disease Week on Capitol Hill in Washington\, DC. Virtual sessions are also available\nTalk with a friend\, teacher or loved one about living with a rare disease. Resource materials can be found here including presentations for younger children\nGet social; post something personal or leverage the Rare Disease Day Toolkit downloads to raise awareness\nJoin the Rare Action Network\, Light Up for Rare or Show Your Stripes Campaigns lead by the National Organization for Rare Disorders (NORD)\nShow support – for yourself or a loved one. The CRN provides special programming and assistance year-round. Discover what is available at no cost to you here\nParticipate in research. Check the Research tab for open studies including an online Quality of Life study currently looking for U.S. volunteers\n\n 
URL:https://cystinosis.org/event/rare-disease-day-2024/
LOCATION:FL
CATEGORIES:Fundraising Events
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240222T190000
DTEND;TZID=UTC:20240222T200000
DTSTAMP:20260403T224756
CREATED:20240129T142643Z
LAST-MODIFIED:20240221T143051Z
UID:4614-1708628400-1708632000@cystinosis.org
SUMMARY:Health Insurance - Online Q&A
DESCRIPTION:CRN’s Adult Leadership Advisory Board will host a Q&A with Levi Peterson and Samantha Saver of Patients Rising. Tap into their experience navigating health insurance during this live session. \nRegister to join the Zoom call on February 22 @ 7pm ET using this link. \n  \n 
URL:https://cystinosis.org/event/adult-leadership-meetup/
LOCATION:FL
CATEGORIES:Gatherings/Conferences
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20231029T203000
DTEND;TZID=UTC:20231029T213000
DTSTAMP:20260403T224756
CREATED:20231009T153826Z
LAST-MODIFIED:20231009T154754Z
UID:4555-1698611400-1698615000@cystinosis.org
SUMMARY:Halloween Trivia Night
DESCRIPTION:Test your knowledge of everything Halloween. \nALAB members are hosting a free\, online trivia night. \nOctober 29th at 8:30pm ET \nJump on the Zoom call for a chance to win a $25 gift card. Open to teens and adults – use this link at the time of the event; no registration necessary. \nWe hope to see you there!
URL:https://cystinosis.org/event/halloween-trivia-night/
LOCATION:FL
CATEGORIES:Gatherings/Conferences
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20230713
DTEND;VALUE=DATE:20230716
DTSTAMP:20260403T224756
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:20260403T224756
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/
LOCATION:FL
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:20260403T224756
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/
LOCATION:FL
CATEGORIES:Fundraising Events
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20230228
DTEND;VALUE=DATE:20230301
DTSTAMP:20260403T224756
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/
LOCATION:FL
CATEGORIES:Fundraising Events
ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2022/10/RDD_final.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20220709T160000
DTEND;TZID=UTC:20220709T170000
DTSTAMP:20260403T224756
CREATED:20220622T222003Z
LAST-MODIFIED:20220622T222003Z
UID:3883-1657382400-1657386000@cystinosis.org
SUMMARY:Cystinosis Sessions: July Video Call
DESCRIPTION:Founding ALAB member\, Brian Ensor shares his first-hand experiences with the AstraZeneca Vaccination Study. Join the Zoom call Saturday\, July 9 at 4:00pm ET. Agenda items include the AZ study\, open discussion and information on the ALAB’s call for new applicants.  \nCalls are held quarterly – we hope you are able to join us!  \nTo join\, click: https://zoom.us/j/2663523786\nMeeting ID: 266 352 3786 \nNew to Zoom? We recommend completing these steps prior to the call. \n\nSecure access to a mobile device (PC\, Apple\, Android)\, desktop or laptop computer\nEnsure reliable internet connection\nDownload Zoom Cloud Meetings here or through your device’s app store\nClick on the link https://zoom.us/j/2663523786\nHave the Meeting ID ready: 266 352 3786. If you use the link provided\, the meeting ID is not needed.\n\nAdd the meeting to your calendar by clicking one of the buttons below.
URL:https://cystinosis.org/event/cystinosis-sessions-july-video-call-2/
LOCATION:FL
CATEGORIES:Gatherings/Conferences
ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2020/03/Logo_Header.png
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20220707
DTEND;VALUE=DATE:20220711
DTSTAMP:20260403T224756
CREATED:20220113T163728Z
LAST-MODIFIED:20220802T183522Z
UID:3556-1657152000-1657497599@cystinosis.org
SUMMARY:CNE International Conference
DESCRIPTION:This summer\, Cystinosis Network Europe (CNE) will host an International Conference July 7-10 in Leuven\, Belgium. The conference will be segmented into a scientific meeting on July 7 with the family conference running July 8-10. \nAccess details here including: \n\nConference website\nRegistration page\nHotel and lodging info\nSession details click here\nQuestions? Email cystinose@ziggo.nl\n\nCall for abstracts! \n\n\n\nDuring the family conference\, a poster session for young researchers will be held\, which is intended to inform families and those living with cystinosis about their relevant research in the cystinosis field. Its primary aim is to fuel hope in people dealing with cystinosis by demonstrating the usefulness and impact of your research on patients’ everyday life\, and drawing the perspectives for a better future. Learn more here. \n\n\n\nCNE is an umbrella grouping of patient support\, advocacy and research organizations in Europe and beyond. \nPost-conference update  \nThe organization of the 3rd CNE International Cystinosis Conference would like to offer all interested parties the opportunity to view the video recordings in 8 languages and watch the presentations. \nYou can find everything about the conference at https://cystinosis.eu. \n 
URL:https://cystinosis.org/event/cne-international-conference/
LOCATION:MTC1 Maria-Theresiacollege\, Sint-Michielsstraat 6\, 3000 Leuven\, Belgium
CATEGORIES:Gatherings/Conferences
ORGANIZER;CN="Cystinosis Network Europe":MAILTO:denise.dunne@cystinosis-europe.eu
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BEGIN:VEVENT
DTSTART;TZID=UTC:20220618T090000
DTEND;TZID=UTC:20220618T140000
DTSTAMP:20260403T224756
CREATED:20220311T004635Z
LAST-MODIFIED:20220315T194711Z
UID:3662-1655542800-1655560800@cystinosis.org
SUMMARY:2nd Annual SC Golf Fundraiser
DESCRIPTION:Gail Potts and her South Carolina team are back at it! \nAfter a successful inaugural event last summer\, Gail continues to honor her daughter Deanna’s legacy with a golf fundraiser to benefit the Cystinosis Research Network (CRN). Proceeds from the event will support research\, family support and education for those impacted by cystinosis.    \nThis year’s golf outing takes place on June 18 at Wild Wing Avocet Golf Course and includes a barbecue lunch. $260 per team or $65 per player with a 9am shotgun start. Get started by registering online today. \nIf you can’t make it to Myrtle Beach\, there are additional ways to support Gail’s cause; you can sponsor a hole or contribute a raffle prize. She also has an Facebook fundraiser you can access here or donate on our web page. \nQuestions? Contact Elwin Miles at elwin.miles@gmail.com or 843-222-5974.  \nCheck out this highlights reel from the 2021 golf outing on our YouTube channel. \nThank you for visiting!
URL:https://cystinosis.org/event/2nd-annual-south-carolina-golf-fundraiser/
LOCATION:Wild Wing Avocet Golf Course\, 1000 Wild Wing Boulevard\, Conway\, South Carolina\, 29526
CATEGORIES:Fundraising Events
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20220507
DTEND;VALUE=DATE:20220508
DTSTAMP:20260403T224756
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/
LOCATION:FL
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
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BEGIN:VEVENT
DTSTART;TZID=UTC:20220427T200000
DTEND;TZID=UTC:20220427T210000
DTSTAMP:20260403T224756
CREATED:20220420T231015Z
LAST-MODIFIED:20220420T231159Z
UID:3737-1651089600-1651093200@cystinosis.org
SUMMARY:Cystaran Eye Drops Virtual Town Hall
DESCRIPTION:On Wednesday April 27\, Leadiant Biosciences and AllianceRx Walgreens Prime invite the cystinosis community to attend a virtual Town Hall. With Cystaran eye drops back in stock\, the discussion agenda will cover recent approval and availability and an interactive Q&A session. Open to residents of the U.S.  \nQuestions can be submitted in advance to cgreeley@cystinosis.org or live during the Zoom session. Use this link to tune in on April 27 at 8:00pm ET / 7:00pm CT / 6:00p MT / 5:00pm PT: https://us06web.zoom.us/j/83279423967 Passcode: 451092
URL:https://cystinosis.org/event/cystaran-eye-drops-virtual-town-hall/
LOCATION:FL
CATEGORIES:Gatherings/Conferences
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BEGIN:VEVENT
DTSTART;TZID=UTC:20220409T160000
DTEND;TZID=UTC:20220409T170000
DTSTAMP:20260403T224756
CREATED:20220310T200251Z
LAST-MODIFIED:20220322T145341Z
UID:3660-1649520000-1649523600@cystinosis.org
SUMMARY:Cystinosis Sessions: April Video Call
DESCRIPTION:Diet and exercise will be the next topics of conversation during the Cystinosis Sessions quarterly Zoom call. Join our Adult Leadership Advisory Board Saturday\, April 9 at 4:00pm ET.  This event is open for all to attend.  \nWe hope to see you there!  \nTo join\, click: https://zoom.us/j/2663523786\nMeeting ID: 266 352 3786 \nHere are instructions to help with downloading Zoom. We recommend completing these steps prior to the call. \n\nSecure access to a mobile device (PC\, Apple\, Android)\, desktop or laptop computer\nEnsure reliable internet connection\nDownload Zoom Cloud Meetings here or through your device’s app store\nClick on the link https://zoom.us/j/2663523786\nHave the Meeting ID ready: 266 352 3786. If you use the link provided\, the meeting ID is not needed.\n\nAdd the meeting to your calendar by clicking one of the buttons below.
URL:https://cystinosis.org/event/cystinosis-sessions-april-video-call-2/
LOCATION:FL
CATEGORIES:Gatherings/Conferences
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20220228
DTEND;VALUE=DATE:20220301
DTSTAMP:20260403T224756
CREATED:20220128T232845Z
LAST-MODIFIED:20220228T051018Z
UID:3588-1646006400-1646092799@cystinosis.org
SUMMARY:Rare Disease Day 2022
DESCRIPTION:February 28th marks the 12th annual Rare Disease Day (RDD). \nObserved on the rarest day of the year\, the global event campaigns for equity for the over 7\,000 rare diseases currently identified. Among those rare diseases is cystinosis. Cystinosis is a genetic\, lysosomal storage disorder where unusual cystine accumulation occurs in every cell in the body. The cystine buildup causes tissue and organ failure\, leading to kidney failure\, muscle wasting\, swallowing difficulty\, diabetes\, photophobia\, and more. Our cystinosis community is known to have a population of 2\,000 worldwide with 600 residing in the U.S. \nIf you are ready to take action\, here are a few ways we can work together make a better world for those living with a rare disease. Thank you for visiting! \n– Virtual events: \n\nRare Disease Day: A Global Priority for Equity (Eurordis) and Demystifying the methodology to determine market value when remunerating the patient community for interactions with the pharmaceutical industry.\nRare Disease Week on Capitol Hill via the EveryLife Foundation.\nRare Disease Day with the NIH (National Institutes of Health).\nRare Disease Day with NORD.\nQuinnipiac RDD Symposium featuring CRN President Jonathan Dicks. Register here for the in-person or virtual option to where patients\, family members\, and researchers will discuss their stories and promote education\, awareness\, and advocacy. It is also an accredited continuing medical education (CME) activity for physicians.\nRare Disease Day Patient Panel with Wego Health. Join rare disease patient leaders to discuss resiliency\, self care\, story sharing\, and raising awareness to support the rare community.\nRare Disease Day Webinar on Feb 24 with the Canadian Organization for Rare Disorders. Bringing Canada’s Rare Disease Drug Strategy from Vision to Reality.\nThe Rare Disease Diversity Coalition and Black Women’s Health initiative is Feb 28 at 12pm ET. Discuss issues facing Black\, Indigenous and People-of-Color (BIPOC) living with a rare disease https://bit.ly/3HDWVyF. \n\n– The AllStripes cystinosis research program is here and we are proud to be a partner. We are looking for families impacted by cystinosis who want to advance cystinosis research from home. You can learn more here: allstripes.com/cystinosis. \n– Share information about rare disease within your networks and social media. For example: Join the Global Genes challenge by posting a photo/video wearing denim with #ShowYourGenes. \n– Light Up for Rare through rarediseaseday.org. \n– School Toolkit. The kit may help you have discussions with teachers or young children about rare disease. \n– Equity Toolkit. Rarediseaseday.org has featured tools to assist people living with a rare disease improve social opportunity\, non-discrimination in education and work\, and equitable access to health\, social care\, diagnosis and treatment. \n– Donate. You can contribute towards the research\, education and support efforts of the CRN by clicking here. \n– View the video message from the Adult Leadership Advisory Board; start watching here.
URL:https://cystinosis.org/event/rare-disease-day-2022/
LOCATION:FL
CATEGORIES:Fundraising Events
ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2022/01/RDD_Support-Pledge-Strapline-1920x1080_ENGLISH.png
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BEGIN:VEVENT
DTSTART;TZID=UTC:20220116T130000
DTEND;TZID=UTC:20220116T180000
DTSTAMP:20260403T224756
CREATED:20220113T173052Z
LAST-MODIFIED:20220113T203131Z
UID:3560-1642338000-1642356000@cystinosis.org
SUMMARY:A Benefit for Elle
DESCRIPTION:Join The Hilltop and Dicks Family for a fundraiser to benefit sweet Elle. Elle was diagnosed with cystinosis and her family\, friends and community have supported her every step of the way. Her father is Jon Dicks\, President of the Cystinosis Research Network. You can read about the first few years of her journey as documented here in the Fall 2019 issue of The Cystinosis Advocate Newsletter. \nOn Sunday\, January 16th\, a local bar and restaurant will donate tips and a portion of sales to benefit Elle and her fight against cystinosis. If you are not in the Cincinnati area\, you can donate to the Cystinosis Research Network here. \nThank you for your support!
URL:https://cystinosis.org/event/a-benefit-for-elle/
LOCATION:The Hilltop\, 950 Pavillion Street\, Cincinnati\, OH\, 45202\, United States
CATEGORIES:Fundraising Events
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BEGIN:VEVENT
DTSTART;TZID=UTC:20220108T160000
DTEND;TZID=UTC:20220108T170000
DTSTAMP:20260403T224756
CREATED:20220106T164011Z
LAST-MODIFIED:20220106T164011Z
UID:3533-1641657600-1641661200@cystinosis.org
SUMMARY:Cystinosis Sessions: January Video Call
DESCRIPTION:Saturday\, January 8th at 4:00pm ET\, join the Adult Leadership Advisory Board (ALAB). Discuss mental toughness and ways to stay positive with others within the cystinosis community. \nPlease note: this is not just for adults living with cystinosis\, everyone interested is invited to attend. \nTo join\, click: https://zoom.us/j/2663523786\nMeeting ID: 266 352 3786 \nHere are instructions to help with downloading Zoom. We recommend completing these steps prior to the call. \n\nSecure access to a mobile device (PC\, Apple\, Android)\, desktop or laptop computer\nEnsure reliable internet connection\nDownload Zoom Cloud Meetings here or through your device’s app store\nClick on the link https://zoom.us/j/2663523786\nHave the Meeting ID ready: 266 352 3786. If you use the link provided\, the meeting ID is not needed.\n\nAdd the meeting to your calendar by clicking one of the buttons below.
URL:https://cystinosis.org/event/cystinosis-sessions-january-video-call-2/
LOCATION:FL
CATEGORIES:Fundraising Events
ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2020/03/Logo_Header.png
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BEGIN:VEVENT
DTSTART;TZID=UTC:20211002T160000
DTEND;TZID=UTC:20211002T170000
DTSTAMP:20260403T224756
CREATED:20210930T154448Z
LAST-MODIFIED:20210930T181033Z
UID:3429-1633190400-1633194000@cystinosis.org
SUMMARY:Cystinosis Sessions: October Video Call
DESCRIPTION:Saturday\, October 2nd at 4:00pm ET\, join the Adult Leadership Advisory Board (ALAB) for a Zoom discussion. Chat with others in the cystinosis community about current events\, travel and vacation tips\, staying safe curing COVID-19\, and whatever is on your mind. \nPlease note: this is not just for adults living with cystinosis\, everyone interested is invited to attend. \nTo join\, click: https://zoom.us/j/2663523786\nMeeting ID: 266 352 3786 \nHere are instructions to help with downloading Zoom. We recommend completing these steps prior to the call. \n\nSecure access to a mobile device (PC\, Apple\, Android)\, desktop or laptop computer\nEnsure reliable internet connection\nDownload Zoom Cloud Meetings here or through your device’s app store\nClick on the link https://zoom.us/j/2663523786\nHave the Meeting ID ready: 266 352 3786. If you use the link provided\, the meeting ID is not needed.\n\nAdd the meeting to your calendar by clicking one of the buttons below.
URL:https://cystinosis.org/event/cystinosis-sessions-october-video-call/
LOCATION:FL
CATEGORIES:Gatherings/Conferences
ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2020/03/Logo_Header.png
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END:VCALENDAR