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:VEVENT DTSTART;VALUE=DATE:20190427 DTEND;VALUE=DATE:20190501 DTSTAMP:20260403T183308 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:20260403T183308 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:20260403T183308 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:20260403T183308 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:20260403T183308 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:20260403T183308 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:20260403T183308 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:20260403T183308 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:20260403T183308 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