BEGIN:VCALENDAR VERSION:2.0 PRODID:-//Cystinosis Research Network - ECPv6.15.18//NONSGML v1.0//EN CALSCALE:GREGORIAN METHOD:PUBLISH X-WR-CALNAME:Cystinosis Research Network X-ORIGINAL-URL:https://cystinosis.org X-WR-CALDESC:Events for Cystinosis Research Network REFRESH-INTERVAL;VALUE=DURATION:PT1H X-Robots-Tag:noindex X-PUBLISHED-TTL:PT1H BEGIN:VTIMEZONE TZID:UTC BEGIN:STANDARD TZOFFSETFROM:+0000 TZOFFSETTO:+0000 TZNAME:UTC DTSTART:20170101T000000 END:STANDARD END:VTIMEZONE BEGIN:VTIMEZONE TZID:America/New_York BEGIN:DAYLIGHT TZOFFSETFROM:-0500 TZOFFSETTO:-0400 TZNAME:EDT DTSTART:20190310T070000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:-0400 TZOFFSETTO:-0500 TZNAME:EST DTSTART:20191103T060000 END:STANDARD BEGIN:DAYLIGHT TZOFFSETFROM:-0500 TZOFFSETTO:-0400 TZNAME:EDT DTSTART:20200308T070000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:-0400 TZOFFSETTO:-0500 TZNAME:EST DTSTART:20201101T060000 END:STANDARD BEGIN:DAYLIGHT TZOFFSETFROM:-0500 TZOFFSETTO:-0400 TZNAME:EDT DTSTART:20210314T070000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:-0400 TZOFFSETTO:-0500 TZNAME:EST DTSTART:20211107T060000 END:STANDARD END:VTIMEZONE BEGIN:VEVENT DTSTART;VALUE=DATE:20200815 DTEND;VALUE=DATE:20200816 DTSTAMP:20260403T183514 CREATED:20200806T065341Z LAST-MODIFIED:20200814T184450Z UID:2496-1597449600-1597535999@cystinosis.org SUMMARY:Podcast: Youth to Adult Transition (part 1) DESCRIPTION:Youth to Adult Transition Part 1- Discussion with Medical Professionals \nThe third podcast from the ALAB will focus on transitioning from youth to adult medical care. Part one of the youth to adult transition conversation begins with the healthcare professional opinion. Join us and special guests Dr. Paul Grimm from Lucile Packard Children’s Hospital and Stanford University of Medicine and Dori Rivera\, PAM (Patient Access Manager) from Horizon Therapeutics. \nHosts from the Adult Leadership Advisory Board (ALAB) are Jana Healy\, Sara Healy\, Steve Schleuder\, Cheryl Simoens. \nBeginning August 15\,2020 at 9am ET\, this link will go live and connect you to the podcast via YouTube: https://youtu.be/zEMdQmxR0UU. \nThank you for your interest. URL:https://cystinosis.org/event/podcast-youth-to-adult-transition-part-1/ ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2020/02/Website_Header.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=UTC:20200801T120000 DTEND;TZID=UTC:20200801T133000 DTSTAMP:20260403T183514 CREATED:20200729T053416Z LAST-MODIFIED:20200729T053416Z UID:2490-1596283200-1596288600@cystinosis.org SUMMARY:Cystinosis Sessions: Exercise DESCRIPTION:The Cystinosis Sessions live video series continues on Saturday\, August 1st from 12:00pm – 1:30pm ET. The Adult Leadership Advisory Board (ALAB) will lead the discussion open to all community members. \nCystinosis Sessions: Exercise \n\nImportance of exercise\nTypes of exercise\n\nStrength training\nAerobics\nStretching\nBalance training\nModerate vs Intense exercise\n\n\nAnd more\n\nPlease download the Zoom app prior to the meeting. \nJoin Zoom Meeting\nhttps://zoom.us/j/2663523786\nMeeting ID: 266 352 3786\nClick on the above and have the Meeting ID ready\, if you use the link provided\, the meeting ID is not needed. URL:https://cystinosis.org/event/cystinosis-sessions-exercise/ CATEGORIES:Gatherings/Conferences ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2020/03/Logo_Header.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=UTC:20200711T160000 DTEND;TZID=UTC:20200711T173000 DTSTAMP:20260403T183514 CREATED:20200711T133417Z LAST-MODIFIED:20200711T133417Z UID:2484-1594483200-1594488600@cystinosis.org SUMMARY:Cystinosis Sessions: Mental Health DESCRIPTION:The forth live video conference hosted by the Adult Leadership Advisory Board (ALAB) will discuss Mental Health\, Anxiety\, Depression\, and Coping. Our featured guest is Maya Doyle\, MSW\, PhD\, LCSW. We look forward to seeing you at 4pm ET on July 11th. \nJoin Zoom Meeting\nhttps://zoom.us/j/2663523786 \nMeeting ID: 266 352 3786 \nZoom Meetings Instructions \nDesktop\, laptop or mobile device (PC\, Apple\, Android)\nReliable internet\nDownload Zoom Cloud Meetings Here or your devices app store\nClick on the above and have the Meeting ID ready\, if you use the link provided\, the meeting ID is not needed. URL:https://cystinosis.org/event/cystinosis-sessions-mental-health/ CATEGORIES:Gatherings/Conferences ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2020/03/Logo_Header.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=UTC:20200606T120000 DTEND;TZID=UTC:20200606T133000 DTSTAMP:20260403T183514 CREATED:20200521T050942Z LAST-MODIFIED:20200521T051344Z UID:2430-1591444800-1591450200@cystinosis.org SUMMARY:Cystinosis Sessions: Overcoming Limitations & Goal Setting DESCRIPTION:The third live video conference takes place June 6 at 12:00 pm ET. The Adult Leadership Advisory Board (adults living with cystinosis) will host the event. Topics will include: \n\nFacing challenges\nPeer pressure\nLimitations & how to overcome them\nGoal setting\n\nDownloading Zoom/Video Conference Prep \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\nJoin Zoom Meeting\nhttps://zoom.us/j/2663523786\nMeeting ID: 266 352 3786 \nAdd the meeting to your calendar by clicking one of the buttons below. We look forward to “seeing” you and hearing you on June 6th! URL:https://cystinosis.org/event/cystinosis-sessions-overcoming-limitations-goal-setting/ CATEGORIES:Gatherings/Conferences ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2020/03/Logo_Header.png END:VEVENT BEGIN:VEVENT DTSTART;VALUE=DATE:20200507 DTEND;VALUE=DATE:20200508 DTSTAMP:20260403T183514 CREATED:20200415T000234Z LAST-MODIFIED:20200415T001744Z UID:2400-1588809600-1588895999@cystinosis.org SUMMARY:Podcast Discussion: Coping with Loss & Grief DESCRIPTION:The next topic in the Adult Leadership Advisory Board’s (ALAB’s) podcast series focuses on coping with loss and grief. This is the second installment of the series – Cystinosis Rare: A Journey into the Unknown. \nThe podcast will be published on YouTube on Cystinosis Awareness Day\, May 7th. \nOur featured guest and episode leader is Maya Doyle.\nPartnering with the cystinosis community for over a decade\, Maya is a professor and certified social worker (CSW) specializing in nephrology. Her unique background and set of experiences will make this a conversation you do not want to miss! \nIn preparation for the podcast recording\, please send any questions for Maya or thoughts you’d like to add by emailing Jana at jana_healy752@hotmail.com. Emails will be accepted through April 15th. Your names will be kept confidential and will not be mentioned during the episode. \nSubscribe to our YouTube page and receive an email alert when the podcast is available: http://bit.ly/2Y28tsx on Thursday\, May 7th. We hope you tune in! URL:https://cystinosis.org/event/lossgrief/ CATEGORIES:Gatherings/Conferences ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2020/02/Website_Header.png END:VEVENT BEGIN:VEVENT DTSTART;VALUE=DATE:20200507 DTEND;VALUE=DATE:20200508 DTSTAMP:20260403T183514 CREATED:20191130T062559Z LAST-MODIFIED:20200504T182950Z UID:2313-1588809600-1588895999@cystinosis.org SUMMARY:Cystinosis Awareness Day - 3rd Annual DESCRIPTION:Cystinosis Awareness Day is recognized as May 7th for the most commonly linked cystinosis mutation\, the 57-kb deletion. This marks the third year we’ve come together on this day to support education\, awareness\, research\, and fundraising for our rare disease. \nMonths of planning go into Cystinosis Awareness Day. In-person events like 57 Miles for Cystinosis or Miles for Moose require training\, sponsors\, team coordination\, and consume a massive amount of time and dedication. With the latest COVID-19 restrictions\, this year’s events have been canceled\, postponed or re-imagined. We thank the entire community for your unwavering support – now more than ever. \nIt’s like our CRN President says\, “Cystinosis doesn’t stop. Until there is a cure\, neither will we.” \nCystinosis does not ease up during a worldwide pandemic; it does not understand quarantine. Not for one single day\, not for one hour\, not for one second do bodies living with cystinosis get a break. And we thank you for enduring this ongoing battle with us. \nHere are a few ways to help us in this fight: \n\nLike & share our awareness video\nUpdate your Facebook profile frame\nShare your cystinosis experience with a friend\, neighbor\, or colleague (in compliance with your local COVID-19 guidelines)\nRead inspiring cystinosis stories\nDonate\nStart a fundraiser by emailing info@cystinosis.org\n\nIf you’d like to learn more about cystinosis resources and research\, click here. We are proud to be one of the only organizations to provide comprehensive support\, education\, awareness\, and research relevant to each point in the cystinosis journey. \nThank you! URL:https://cystinosis.org/event/cystinosis-awareness-day-3rd-annual/ CATEGORIES:Fundraising Events ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20200502T160000 DTEND;TZID=America/New_York:20200502T173000 DTSTAMP:20260403T183514 CREATED:20200414T234814Z LAST-MODIFIED:20200414T235101Z UID:2399-1588435200-1588440600@cystinosis.org SUMMARY:Live Video Conference: Dependence\, Education & Employment DESCRIPTION:Join the Cystinosis Sessions video conference series hosted by the Adult Leadership Advisory Board (ALAB). Starting May 2nd at 4:00 pm ET\, the ALAB welcomes anyone impacted by cystinosis. This “session” will focus on: \n\nEducation\nEmployment\nImportance of Being Self-Reliant vs Being Dependent\nEssential Needs & Medication\nGeneral conversation as time allows\n\nTo join the meeting: \nhttps://zoom.us/j/2663523786 \nMeeting ID: 266 352 3786 \nDownloading Zoom/Video Conference Preparation \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. URL:https://cystinosis.org/event/live-video-conference-dependence-education-employment/ CATEGORIES:Gatherings/Conferences ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2020/03/Logo_Header.png END:VEVENT BEGIN:VEVENT DTSTART;VALUE=DATE:20200502 DTEND;VALUE=DATE:20200503 DTSTAMP:20260403T183514 CREATED:20200221T065804Z LAST-MODIFIED:20200414T221034Z UID:2368-1588377600-1588463999@cystinosis.org SUMMARY:57 Miles for Cystinosis DESCRIPTION: URL:https://cystinosis.org/event/57-miles-for-cystinosis-2020/ LOCATION:DE\, United States CATEGORIES:Fundraising Events ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2020/02/Website_Header-1.png ORGANIZER;CN="Clinton Moore":MAILTO:Clintonmoore1@aol.com END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20200425T070000 DTEND;TZID=America/New_York:20200425T150000 DTSTAMP:20260403T183514 CREATED:20190910T193640Z LAST-MODIFIED:20200408T044503Z UID:1685-1587798000-1587826800@cystinosis.org SUMMARY:Virtual: Cystinosis Network Europe 2020 International Conference DESCRIPTION:Following much consideration\, Cystinosis Network Europe (CNE) and Cystinosis Ireland have decided to cancel the in-person International Cystinosis Conference planned for Dublin in July 2020 due the ongoing situation with COVID-19. \nThe International Cystinosis Family Conference is now taking place online! \nOn April 25th from 7am to 3pm ET you will have access to this free event. Available in you own home anywhere in the world\, you can now watch cystinosis world experts (with translation) presenting the latest information on managing cystinosis; educational issues; bones and muscles; eyes and possible new treatments; kidneys – pre and post transplant and keeping well; the latest research in gene therapy and other new treatments; pregnancy and male fertility; the impact of COVID-19; and maintaining your mental health. \nConfirmed speakers include Prof Elena Levtchenko (Chair)\, Prof Atif Awan\, Dr Rachel Bishop\, Prof Don Cairns\, Dr Anuj Chauhan\, Dr Stephanie Cherqui\, Prof Paul Goodyer\, Prof Paul Grimm\, Dr Patrick Harrison\, Prof Craig Langman\, Dr Herbie Newell\, Dr Joyce Senior\, and more. \nRegister Now. To secure your place and notify the group of translation preferences. \nAbout CNE \nCystinosis Network Europe (CNE) which comprises members from patient organizations across Europe and further afield. Eight European organisations come together to support people with cystinosis and promote research and form a network. We have a number of projects ongoing to support people living with cystinosis and their families; an international conference every two years; and the development of a Community Advisory Board in Cystinosis\, with the support of EURORDIS. URL:https://cystinosis.org/event/cystinosis-network-europe-2020-international-conference/ CATEGORIES:Gatherings/Conferences ATTACH;FMTTYPE=image/jpeg:https://cystinosis.org/wp-content/uploads/2019/09/CNE.jpg ORGANIZER;CN="Cystinosis Network Europe":MAILTO:denise.dunne@cystinosis-europe.eu END:VEVENT BEGIN:VEVENT DTSTART;VALUE=DATE:20200325 DTEND;VALUE=DATE:20200330 DTSTAMP:20260403T183514 CREATED:20190911T155801Z LAST-MODIFIED:20200320T001329Z UID:1697-1585094400-1585526399@cystinosis.org SUMMARY:National Kidney Foundation (NKF) Spring Clinical Meeting DESCRIPTION:*Update* March 10\, 2020 \nOver the weekend\, the Centers for Disease Control and Prevention (CDC) updated its recommendations for older adults and people with kidney disease or other severe chronic medical conditions. They note that these groups appear to be at higher risk for experiencing more serious COVID-19 illness. Out of an abundance of caution to protect your health\, and the health of the patients you care for\, NKF is changing the NKF 2020 Spring Clinical Meetings (SCM) to a Live-Virtual Meeting.   \nAdditional information on the logistics for live-virtual participation will be provided. Because the NKF is providing the conference as a live-virtual meeting\, no general registration fees will be waived.  However\, attendees who purchased lunch workshops or pre-conference course tickets will be reimbursed\, please look for additional information on this over the coming weeks. \n  \n  URL:https://cystinosis.org/event/national-kidney-foundation-nkf-spring-clinical-meeting/ LOCATION:LA\, United States CATEGORIES:Gatherings/Conferences ORGANIZER;CN="NKF":MAILTO:clinicalmeetings@kidney.org END:VEVENT BEGIN:VEVENT DTSTART;TZID=UTC:20200321T160000 DTEND;TZID=UTC:20200321T173000 DTSTAMP:20260403T183514 CREATED:20200317T212213Z LAST-MODIFIED:20200319T190233Z UID:2378-1584806400-1584811800@cystinosis.org SUMMARY:Cystinosis Sessions: Coronavirus\, Medication DESCRIPTION:Welcome to Cystinosis Sessions\, a series created by the Adult Leadership Advisory Board (ALAB). These video conferences aim to help adults living with cystinosis and hope to inform stakeholders beyond our patient community about life with this rare disease. \nYou are invited to ALAB’s very first video conference – Saturday\, March 21 at 4pm ET.\nTopic: Medication ***UPDATE*** Given the current Coronavirus/COVID-19 climate\, we are adding time to discuss questions and concerns with the ALAB team and Registered Nurse and mom of 2 with cystinosis: Anna Pruitt. \nBelow you will find a draft agenda and Zoom (video conference provider) log in instructions. Please download Zoom prior to the 4pm ET start time. We hope to see you then! \nDraft Agenda: \n\nCoronavirus/COVID-19\nProcysbi: Advantages & Disadvantages\nMedicine containers\nTravel tips/hospital visits with Procysbi\, Cystagon and/or eyedrops (Cystaran)\nMedication odor tips\nPersonal experiences (time permitting)\n\nDownloading Zoom/Video Conference Prep \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\nJoin Zoom Meeting\nhttps://zoom.us/j/2663523786\nMeeting ID: 266 352 3786 \nOne tap mobile\n+16465588656\,\,2663523786# US (New York)\n+16699009128\,\,2663523786# US (San Jose) \nDial by your location\n+1 646 558 8656 US (New York)\n+1 669 900 9128 US (San Jose)\nMeeting ID: 266 352 3786\nFind your local number: https://zoom.us/u/a9v2YRNtU URL:https://cystinosis.org/event/cystinosis-sessions-medication/ CATEGORIES:Gatherings/Conferences ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2020/03/Logo_Header.png END:VEVENT BEGIN:VEVENT DTSTART;VALUE=DATE:20200229 DTEND;VALUE=DATE:20200301 DTSTAMP:20260403T183514 CREATED:20200218T151504Z LAST-MODIFIED:20200220T161841Z UID:2358-1582934400-1583020799@cystinosis.org SUMMARY:Podcast: Staying Positive while living with Cystinosis DESCRIPTION:Welcome to our podcast series – Cystinosis Rare: A Journey into the Unknown. \nLead by the Adult Leadership Advisory Board (ALAB)\, this series will focus on issues specific to our rare disease. \nThe initial podcast episode launches on Rare Disease Day – February 29\, 2020. \nThis episode focuses on positive aspects and inspiring stories of adults living with cystinosis. There will be two featured guests: William Brink and Shannon Keizer. William (Bill) will discuss his journey and how his brother inspired him to start weightlifting. Shannon will share her experience from overcoming low mental health to working towards a nursing degree. \nALAB hosts will be Jana Healy\, Sara Healy\, Steve Scheudler\, and Cheryl Simoens. All four are adults living with cystinosis. \nThe episode will be approximately 1 hour in length. \nSubscribe to our YouTube page and receive an email alert when the podcast is available: http://bit.ly/2Y28tsx on Saturday\, February 29th. We hope you tune in! URL:https://cystinosis.org/event/podcast-staying-positive-while-living-with-cystinosis/ CATEGORIES:Gatherings/Conferences ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2020/02/Website_Header.png END:VEVENT BEGIN:VEVENT DTSTART;VALUE=DATE:20191203 DTEND;VALUE=DATE:20191204 DTSTAMP:20260403T183514 CREATED:20191120T162128Z LAST-MODIFIED:20191222T124032Z UID:2254-1575331200-1575417599@cystinosis.org SUMMARY:Giving Tuesday DESCRIPTION:The CRN is a proud participant in Giving Tuesday – a global movement encouraging people to “do good.” This is our fifth year celebrating the event that has inspired millions to give\, collaborate\, and celebrate generosity. The Tuesday after U.S. Thanksgiving has been designated as the global day for giving back. It was created in response to the shopping frenzy surrounding Black Friday and Cyber Monday. \nHere’s a glimpse of the overall impact from 2018’s Giving Tuesday: \n\n150+ countries participated\n110+ community coalitions involved\n$440M+ dollars raised online\n\nGiving Tuesday – December 3rd\, 2019 \n#GreatGivers Campaign \nThis year we’ve asked community members to reflect on those who’ve helped along the cystinosis journey. Leading up to Giving Tuesday\, we are sharing some of those experiences to recognize the sacrifice\, generosity\, and selflessness many of us have been fortunate to benefit from. A nod to those #GreatGivers. Click on their stories below. \n\nAna\nCheryl\nGail\nIna\nJana\nJenn\nSara\nSteve\n\nWays to Help \nYour online donation will benefit our cystinosis community as we continue to provide grassroots research\, meaningful support and educational programs. However\, there are many ways to “give” beyond monetary donations. Visit our How to Help page. \nUPDATE: Our #GreatGivers campaign surpassed an online fundraising goal of $5\,000! \nA special thank you to each person who has supported the CRN in our quest for improved treatments and ultimately\, a cure for cystinosis. \nHappy Holidays! URL:https://cystinosis.org/event/giving-tuesday/ CATEGORIES:Fundraising Events ATTACH;FMTTYPE=image/jpeg:https://cystinosis.org/wp-content/uploads/2019/11/GivingTues2019.jpg ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org END:VEVENT BEGIN:VEVENT DTSTART;VALUE=DATE:20191105 DTEND;VALUE=DATE:20191111 DTSTAMP:20260403T183514 CREATED:20190910T194605Z LAST-MODIFIED:20190910T194605Z UID:1688-1572912000-1573430399@cystinosis.org SUMMARY:American Society of Nephrology – Kidney Week DESCRIPTION:CRN will join the American Society for Nephrology (ASN) and more than 13\,000 other kidney professionals from across the globe at Kidney Week 2019 in Washington\, DC. The world’s premier nephrology meeting\, Kidney Week provides participants exciting and challenging opportunities to exchange knowledge\, learn the latest scientific and medical advances\, and listen to engaging and provocative discussions with leading experts in the field. URL:https://cystinosis.org/event/american-society-of-nephrology-kidney-week/ LOCATION:Walter E. Washington Convention Center\, Washington\, DC\, USA\, 801 Mt Vernon Pl NW\, Washington\, 20001\, United States END:VEVENT BEGIN:VEVENT DTSTART;VALUE=DATE:20191101 DTEND;VALUE=DATE:20191104 DTSTAMP:20260403T183514 CREATED:20190911T154809Z LAST-MODIFIED:20190911T154925Z UID:1695-1572566400-1572825599@cystinosis.org SUMMARY:Community Advisory Board (CAB) Meeting DESCRIPTION:The Community Advisory Board (CAB) was created to establish a worldwide cystinosis committee under the mentorship of Eurordis\, the representative body for rare diseases in Europe. \nThe key objective of CABs is to engage with pharmaceutical companies in order to bring the patient perspective to clinical trials and other areas. \nMembers of the CAB receive extensive education and training in all aspects of clinical trials/treatment development so that they become patient experts. The Cystinosis CAB has expanded its remit to engage at all stages of research development\, including at the early research stage\, and to provide advice and the patient perspective to ensure more effective clinical trials and more efficient and speedy market access. \nMore information on CABs can be found on the EURORDIS website. URL:https://cystinosis.org/event/community-advisory-board-cab-meeting/ END:VEVENT BEGIN:VEVENT DTSTART;VALUE=DATE:20190918 DTEND;VALUE=DATE:20190921 DTSTAMP:20260403T183514 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 END:VEVENT BEGIN:VEVENT DTSTART;VALUE=DATE:20190909 DTEND;VALUE=DATE:20190910 DTSTAMP:20260403T183514 CREATED:20191010T153425Z LAST-MODIFIED:20191010T153553Z UID:2141-1567987200-1568073599@cystinosis.org SUMMARY:Seed-Balls for Cystinosis DESCRIPTION:(Left) Carter'(s last boat ride before G-J tube insertion. (Right) Look who turned 2! \nOver the last few years\, Carter’s family has taken a strong interest in monarch butterflies. Post diagnosis\, Grandmom (Carrie) knew she wanted to create an event to honor his resilient spirit. To celebrate Carter’s second birthday and new found love for butterflies\, they’ve partnered with Seed-Balls. This fundraiser sells clay\, compost\, and wildflower seeds to support pollinators AND proceeds benefit the Cystinosis Research Network. \n  \nUPDATE: Seed-Balls orders are now closed. If you are still interestd in supporting Carter and the cystinosis community\, you can make a secure donation here. \nThank you for your support! URL:https://cystinosis.org/event/seed-balls-for-cystinosis/ CATEGORIES:Fundraising Events END:VEVENT BEGIN:VEVENT DTSTART;VALUE=DATE:20190718 DTEND;VALUE=DATE:20190721 DTSTAMP:20260403T183514 CREATED:20190124T211427Z LAST-MODIFIED:20190711T143440Z UID:1144-1563408000-1563667199@cystinosis.org SUMMARY:2019 CRN Family Conference DESCRIPTION:Ring in the future with us at the 2019 Family Conference. The weekend is filled with research updates from clinicians and international cystinosis organizations\, opportunities to meet and renew friendships\, participate in studies\, and interact with expert health care professionals. Browse the draft agenda here. \nThe 2019 Family Conference is July 18 – 20\, 2019 at the Hilton Philadelphia at Penn’s Landing. The Hilton Philadelphia at Penn’s Landing is the only hotel on Philadelphia’s beautiful waterfront in the historic district. They offer an indoor pool\, lobby bar\, 24-hour coffee shop and waterfront dining at Keating’s Rope & Anchor\, Bar + Kitchen. Walk to Philadelphia attractions including the Liberty Bell\, Independence Hall\, Museum of the American Revolution and Blue Cross Riverrink Summerfest. For more information on the hotel please visit their website. URL:https://cystinosis.org/event/2019-crn-family-conference/ LOCATION:Hilton at Penns Landing\, 201 South Christopher Columbus Blvd\, Philadelphia\, PA\, 19106 CATEGORIES:Gatherings/Conferences ATTACH;FMTTYPE=image/jpeg:https://cystinosis.org/wp-content/uploads/2019/01/Design-41.jpeg END:VEVENT BEGIN:VEVENT DTSTART;VALUE=DATE:20190507 DTEND;VALUE=DATE:20190508 DTSTAMP:20260403T183514 CREATED:20190503T052931Z LAST-MODIFIED:20190507T074552Z UID:1594-1557187200-1557273599@cystinosis.org SUMMARY:Cystinosis Awareness Day 2019 DESCRIPTION: URL:https://cystinosis.org/event/cystinosis-awareness-day-2019/ END:VEVENT BEGIN:VEVENT DTSTART;TZID=UTC:20190504T120000 DTEND;TZID=UTC:20190505T120000 DTSTAMP:20260403T183514 CREATED:20190417T185926Z LAST-MODIFIED:20190503T184057Z UID:1532-1556971200-1557057600@cystinosis.org SUMMARY:2nd Annual 57 Miles for Cystinosis DESCRIPTION: URL:https://cystinosis.org/event/57-miles/ LOCATION:Sussex Central High School\, 26026 Patriots Way\, Georgetown\, DE\, 19947\, United States CATEGORIES:Fundraising Events ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2019/04/57miles_Website.png ORGANIZER;CN="Clinton Moore":MAILTO:Clintonmoore1@aol.com END:VEVENT BEGIN:VEVENT DTSTART;VALUE=DATE:20190427 DTEND;VALUE=DATE:20190501 DTSTAMP:20260403T183514 CREATED:20190125T185348Z LAST-MODIFIED:20190307T173615Z UID:1166-1556323200-1556668799@cystinosis.org SUMMARY:Pediatric Academic Societies (PAS) Annual Meeting DESCRIPTION:The PAS Meeting brings together thousands of pediatricians and other health care providers united by a common mission: improve the health and well-being of children worldwide. \nEvery one of the top 10 children’s hospitals support the Pediatric Academic Societies (PAS) Meeting as the CRN has for years. We look forward to working with the providers and attendees once again in 2019. \nThe Patient Congress is focused on incorporating the patient voice across the entire product lifecycle. This international gathering includes researchers\, academics\, as well as clinical care providers and community practitioners. Presentations cover issues of interest to generalists as well as topics critical to a wide array of specialty and sub-specialty areas. \nEVENT INFORMATION \n\nRegister via the PAS website\nView the PAS Program\nIf you are interested in becoming involved in cystinosis advocacy and awareness\, contact Aimee at adelmann.aimee@gmail.com. URL:https://cystinosis.org/event/pediatric-academic-societies-pas-annual-meeting/ LOCATION:Baltimore Convention Center ATTACH;FMTTYPE=image/jpeg:https://cystinosis.org/wp-content/uploads/2019/01/Design-34.jpeg END:VEVENT BEGIN:VEVENT DTSTART;VALUE=DATE:20190311 DTEND;VALUE=DATE:20190313 DTSTAMP:20260403T183514 CREATED:20190125T185649Z LAST-MODIFIED:20190228T172652Z UID:1170-1552262400-1552435199@cystinosis.org SUMMARY:Patient Congress DESCRIPTION:The PAS Meeting brings together thousands of pediatricians and other health care providers united by a common mission: improve the health and well-being of children worldwide. \nThe Patient Congress is focused on incorporating the patient voice across the entire product lifecycle. Through three tailored tracks\, examine the pieces integral to the patient journey of both small and large patient populations including patient access\, adherence\, and advocacy. With more than 250+ industry leaders representing life sciences companies\, pharmacies\, health plans\, provider organizations\, patient groups\, and patient leaders\, join the conversation around innovative and collaborative ways we can improve access and health outcomes for patients. Develop your organization’s patient-centric strategy from drug development through commercialization\, break down internal silos\, and improve patients’ lives across the entire continuum of care. \n  \nEVENT INFORMATION \n\nRegister here\nLearn about the Patient Advocacy track\nTake part in raising education and awareness about cystinosis. Contact Aimee to get started adelmann.aimee@gmail.com. URL:https://cystinosis.org/event/patient-congress-2/ LOCATION:Hilton at Penns Landing\, 201 South Christopher Columbus Blvd\, Philadelphia\, PA\, 19106 ATTACH;FMTTYPE=image/jpeg:https://cystinosis.org/wp-content/uploads/2019/01/Design-35.jpeg END:VEVENT BEGIN:VEVENT DTSTART;VALUE=DATE:20190228 DTEND;VALUE=DATE:20190301 DTSTAMP:20260403T183514 CREATED:20190125T184041Z LAST-MODIFIED:20190228T172042Z UID:1164-1551312000-1551398399@cystinosis.org SUMMARY:Rare Disease Day DESCRIPTION:February 28\, 2019\nWorldwide\nHere’s a fun way to “Share Your Rare” this Rare Disease Day – sign up for a free cystinosis ribbon temporary tattoo. \nSpread cystinosis awareness on Rare Disease Day\, Cystinosis Awareness Day and all year long! \nWe’ve transformed the cystinosis awareness ribbon into a temporary tattoo. Now you can “wear your rare” and help start important conversations. \nOnce your temporary tattoo arrives\, start sharing! Post it for the world the see. If you are on social media\, tag your ribbon photo with #mycystinosis to educate others about cystinosis and what it means to you (the good\, the bad\, and sometimes the ugly). Your post could help another family or individual trying to manage daily life with a rare disease. \nDid you know? Our awareness ribbon was inspired by a structure standing 12 foot (3.66m) tall. It was thoughtfully created containing 2\,000 green lights\, one light for each person living with cystinosis. The outline of white lights represent those who have passed but remain part of who we are today. Now\, this symbol of strength has been transformed into a temporary tattoo ready to travel the globe spreading awareness\, education\, support and love for our cystinosis warriors…thanks to you! \nI’d like a free cystinosis temporary tattoo!\nPlease complete the form below. We ship internationally. Recommended for ages 4+. If you have questions or know someone who’d like one\, email info@cystinosis.org. \nThere are more great ways to get involved. Find out more. \n\n\n \n \n Name*\n \n \n First\n \n \n \n \n Last\n \n \n \n Email*\n \n Enter Email\n \n \n \n Confirm Email\n \n \n \n Address* \n \n \n Street Address\n \n \n Address Line 2\n \n \n City\n \n \n State / Province / Region\n \n \n ZIP / Postal Code\n \n \n Country\n AfghanistanAlbaniaAlgeriaAmerican SamoaAndorraAngolaAnguillaAntarcticaAntigua and BarbudaArgentinaArmeniaArubaAustraliaAustriaAzerbaijanBahamasBahrainBangladeshBarbadosBelarusBelgiumBelizeBeninBermudaBhutanBoliviaBonaire\, Sint Eustatius and SabaBosnia and HerzegovinaBotswanaBouvet IslandBrazilBritish Indian Ocean TerritoryBrunei DarussalamBulgariaBurkina FasoBurundiCabo VerdeCambodiaCameroonCanadaCayman IslandsCentral African RepublicChadChileChinaChristmas IslandCocos IslandsColombiaComorosCongoCongo\, Democratic Republic of theCook IslandsCosta RicaCroatiaCubaCuraçaoCyprusCzechiaCôte d'IvoireDenmarkDjiboutiDominicaDominican RepublicEcuadorEgyptEl SalvadorEquatorial GuineaEritreaEstoniaEswatiniEthiopiaFalkland IslandsFaroe IslandsFijiFinlandFranceFrench GuianaFrench PolynesiaFrench Southern TerritoriesGabonGambiaGeorgiaGermanyGhanaGibraltarGreeceGreenlandGrenadaGuadeloupeGuamGuatemalaGuernseyGuineaGuinea-BissauGuyanaHaitiHeard Island and McDonald IslandsHoly SeeHondurasHong KongHungaryIcelandIndiaIndonesiaIranIraqIrelandIsle of ManIsraelItalyJamaicaJapanJerseyJordanKazakhstanKenyaKiribatiKorea\, Democratic People's Republic ofKorea\, Republic ofKuwaitKyrgyzstanLao People's Democratic RepublicLatviaLebanonLesothoLiberiaLibyaLiechtensteinLithuaniaLuxembourgMacaoMadagascarMalawiMalaysiaMaldivesMaliMaltaMarshall IslandsMartiniqueMauritaniaMauritiusMayotteMexicoMicronesiaMoldovaMonacoMongoliaMontenegroMontserratMoroccoMozambiqueMyanmarNamibiaNauruNepalNetherlandsNew CaledoniaNew ZealandNicaraguaNigerNigeriaNiueNorfolk IslandNorth MacedoniaNorthern Mariana IslandsNorwayOmanPakistanPalauPalestine\, State ofPanamaPapua New GuineaParaguayPeruPhilippinesPitcairnPolandPortugalPuerto RicoQatarRomaniaRussian FederationRwandaRéunionSaint BarthélemySaint Helena\, Ascension and Tristan da CunhaSaint Kitts and NevisSaint LuciaSaint MartinSaint Pierre and MiquelonSaint Vincent and the GrenadinesSamoaSan MarinoSao Tome and PrincipeSaudi ArabiaSenegalSerbiaSeychellesSierra LeoneSingaporeSint MaartenSlovakiaSloveniaSolomon IslandsSomaliaSouth AfricaSouth Georgia and the South Sandwich IslandsSouth SudanSpainSri LankaSudanSurinameSvalbard and Jan MayenSwedenSwitzerlandSyria Arab RepublicTaiwanTajikistanTanzania\, the United Republic ofThailandTimor-LesteTogoTokelauTongaTrinidad and TobagoTunisiaTurkmenistanTurks and Caicos IslandsTuvaluTürkiyeUS Minor Outlying IslandsUgandaUkraineUnited Arab EmiratesUnited KingdomUnited StatesUruguayUzbekistanVanuatuVenezuelaViet NamVirgin Islands\, BritishVirgin Islands\, U.S.Wallis and FutunaWestern SaharaYemenZambiaZimbabweÅland Islands \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Δ \n \n\n  URL:https://cystinosis.org/event/rare-disease-day/ ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2019/01/TempTattoo1-e1550072611541.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=UTC:20190223T100000 DTEND;TZID=UTC:20190223T160000 DTSTAMP:20260403T183514 CREATED:20190129T183207Z LAST-MODIFIED:20190213T174158Z UID:1159-1550916000-1550937600@cystinosis.org SUMMARY:Stand Up to Cystinosis DESCRIPTION:Saturday\, February 23\, 2019 from 10:00 am – 4:00 pm \nWe created this event to help raise money for cystinosis because this disease is something very near and dear to my heart. I have been living with this disease since I was 4-years-old. One day I was talking to my friend and trainer\, JD\, the owner of the gym. I mentioned starting a fundraiser making and selling t-shirts\, JD mentioned a weight lifting event and here we are. –Bill Brink \nIf you are unable to attend the event\, please consider making a donation in Bill’s honor. URL:https://cystinosis.org/event/stand-up-to-cystinosis/ LOCATION:Florence Strength and Conditioning\, 330 Weaver Road\, #100\, Florence\, KY\, 41042 ATTACH;FMTTYPE=image/jpeg:https://cystinosis.org/wp-content/uploads/2019/01/1.jpg END:VEVENT BEGIN:VEVENT DTSTART;VALUE=DATE:20181103 DTEND;VALUE=DATE:20181104 DTSTAMP:20260403T183514 CREATED:20190125T190451Z LAST-MODIFIED:20190125T190451Z UID:1177-1541203200-1541289599@cystinosis.org SUMMARY:Charleston Cystinosis Meetup DESCRIPTION:Coming Soon! URL:https://cystinosis.org/event/charleston-cystinosis-meetup/ LOCATION:Hilton Garden Inn\, 300 Wingo Way\, Mt. Pleasant\, SC\, 29464 END:VEVENT BEGIN:VEVENT DTSTART;TZID=UTC:20181030T080000 DTEND;TZID=UTC:20181030T170000 DTSTAMP:20260403T183514 CREATED:20190125T190638Z LAST-MODIFIED:20190125T190638Z UID:1182-1540886400-1540918800@cystinosis.org SUMMARY:Indianapolis Cystinosis Meetup DESCRIPTION:Coming Soon! URL:https://cystinosis.org/event/indianapolis-cystinosis-meetup/ LOCATION:The Westin Indianapolis\, 241 W. Washington Street\, Indianapolis\, IN\, 46204 END:VEVENT BEGIN:VEVENT DTSTART;VALUE=DATE:20181025 DTEND;VALUE=DATE:20181026 DTSTAMP:20260403T183514 CREATED:20190125T190544Z LAST-MODIFIED:20190125T190544Z UID:1180-1540425600-1540511999@cystinosis.org SUMMARY:American Society of Nephrology DESCRIPTION:Coming Soon! URL:https://cystinosis.org/event/american-society-of-nephrology/ LOCATION:San Diego Convention Center\, 111 W Harbor Dr.\, San Diego\, CA\, 92101 END:VEVENT BEGIN:VEVENT DTSTART;VALUE=DATE:20180908 DTEND;VALUE=DATE:20180909 DTSTAMP:20260403T183514 CREATED:20190125T190750Z LAST-MODIFIED:20190125T190750Z UID:1184-1536364800-1536451199@cystinosis.org SUMMARY:Houston Cystinosis Meetup DESCRIPTION:Coming Soon! URL:https://cystinosis.org/event/houston-cystinosis-meetup/ LOCATION:Embassy Suites By Hilton Houston Energy Corridor\, 11730 Katy Freeway\, Houston\, TX\, 77079 END:VEVENT BEGIN:VEVENT DTSTART;VALUE=DATE:20180715 DTEND;VALUE=DATE:20180719 DTSTAMP:20260403T183514 CREATED:20190125T190914Z LAST-MODIFIED:20190125T190914Z UID:1186-1531612800-1531958399@cystinosis.org SUMMARY:Cystinosis European Conference DESCRIPTION:Coming Soon! URL:https://cystinosis.org/event/cystinosis-european-conference/ LOCATION:Movenpick Hotel Berlin\, Schoneberger Strasse\, 310963 END:VEVENT END:VCALENDAR