BEGIN:VCALENDAR VERSION:2.0 PRODID:-//wp-events-plugin.com//7.3.1//EN BEGIN:VEVENT UID:1@gauchercommunity.org DTSTART;TZID=America/New_York:20260419T190000 DTEND;TZID=America/New_York:20260419T190000 DTSTAMP:20260413T143006Z URL:https://www.gauchercommunity.org/events/spring-teen-young-adult-gather ing-virtual/ SUMMARY:Spring Teen & Young Adult Gathering (Virtual) DESCRIPTION: END:VEVENT BEGIN:VEVENT UID:2@gauchercommunity.org DTSTART;TZID=America/New_York;VALUE=DATE:20260428 DTEND;TZID=America/New_York;VALUE=DATE:20260429 DTSTAMP:20260413T143044Z URL:https://www.gauchercommunity.org/events/new-york-advocacy-day-in-alban y-all-day/ SUMMARY:New York Advocacy Day in Albany (All Day) DESCRIPTION: END:VEVENT BEGIN:VEVENT UID:5@gauchercommunity.org DTSTART;TZID=America/New_York:20260618T190000 DTEND;TZID=America/New_York:20260618T200000 DTSTAMP:20260521T145227Z URL:https://www.gauchercommunity.org/events/webinar-updates-from-the-vengl ustat-clinical-trial-for-gd3-7pm-et-4pm-pt/ SUMMARY:Webinar: Updates From The Venglustat Clinical Trial For GD3 (7pm ET / 4pm PT) DESCRIPTION:Register here.\n\nJoin the Gaucher Community Alliance for a web inar to learn about the data from the venglustat clinical trial in type 3 Gaucher patients. During this session\, Dr. Pramod Mistry will provide an overview of the design and key findings from a Phase 3 clinical study\, wh ich evaluated an investigational oral treatment called venglustat in adult s and teenagers living with type 3 Gaucher disease. This webinar is intend ed to help patients and families better understand ongoing research effort s in the type 3 neuronopathic community.\n\nThis educational program is sp onsored by Sanofi. Venglustat is an investigational treatment and has not been approved by the FDA or any other regulatory authority. The informatio n presented is not intended as medical advice. Please consult your physici an regarding your individual medical condition and treatment options.\n\n* Closed caption translation services available.\n\nPresented By Pramod Mist ry\, MBBS\, PhD\, MA\, MD\n\nProfessor of Medicine (Digestive Diseases) an d of Pediatrics (Gastroenterology)\n\nProfessor of Cellular &\; Molecul ar Physiology\n\nDirector of Yale Lysosomal Disease Center and Gaucher Dis ease Treatment Center\n\nDr. Pramod Mistry is a physician-scientist and Pr ofessor of Medicine at Yale School of Medicine who directs the Yale Gauche r Center for Lysosomal Diseases. For over 30 years\, he has dedicated his career to caring for and researching rare inherited diseases\, particularl y Gaucher disease. Dr. Mistry has helped develop and test new treatments t hat have dramatically improved patients' lives and leads international reg istries tracking thousands of patients to understand disease progression a nd treatment response. He is ranked among the top three world experts in G aucher disease globally and has discovered important connections between r are diseases and more common conditions like Parkinson's disease and cance r. Through his work\, Dr. Mistry has ensured that patients around the worl d\, including children in underserved regions\, can access life-changing t herapies. His research bridges laboratory science with patient care\, and he has trained the next generation of physicians while publishing over 100 influential research papers that advance our understanding of rare diseas es. END:VEVENT BEGIN:VEVENT UID:6@gauchercommunity.org DTSTART;TZID=America/New_York;VALUE=DATE:20260624 DTEND;TZID=America/New_York;VALUE=DATE:20260627 DTSTAMP:20260522T140633Z URL:https://www.gauchercommunity.org/events/women-on-the-hill-advocacy-tri p/ SUMMARY:Women on the Hill Advocacy Trip DESCRIPTION:Registration is now closed.\nLadies\, join us in Washington\, D C!\nAttendees under 18 must be accompanied by a parent or guardian. This t rip is meant to encourage advocacy within our Gaucher population to make n ecessary steps towards policy changes that affect our Gaucher and rare dis ease communities.\nRetreat Schedule:\nWednesday\, June 24th\, 2026 – Arr ivals\, training session\, dinner\n\n 3 PM: Arrivals and check-ins to Hom ewood Suites Navy Yard\n 4 – 6 PM: Legislative training sessions in the conference room of the hotel\n 6:30 – 8:30 PM: Dinner at Jackie DC.\n\ nThursday\, June 25th\, 2026 — Meetings on Capitol Hill with lunch provi ded\, dinner and activity (TBD!)\n\n 9:30 AM – 4:30 PM: All day meeting s on Capitol Hill with senators and representatives\; Lunch will be provid ed.\n 4:45 PM: Group photo on Capitol Hill\n 6:30 PM – 8:30 PM: Dinner and activity\n\nFriday\, June 26\, 2026 – Travels home\n\n 11 AM: Hote l checkout and travels home\n\nFAQ\n\nHotel Booking END:VEVENT BEGIN:VEVENT UID:4@gauchercommunity.org DTSTART;TZID=America/New_York;VALUE=DATE:20260707 DTEND;TZID=America/New_York;VALUE=DATE:20260708 DTSTAMP:20260422T134312Z URL:https://www.gauchercommunity.org/events/sketchnf-rare-square-art-show/ SUMMARY:SketchNF / Rare Square Art Show DESCRIPTION:This July\, SketchNF will be opening a rare disease art show at the Positive Exposure Gallery (opening July 7)\, and they’re looking fo r submissions from across the rare disease community.\n\nThe show is open to anyone living with a rare disease—any condition\, any age. Patients a nd families are invited to submit original artwork alongside their persona l story. Each piece in the exhibit will be created by someone with lived e xperience\, helping to build a space where rare disease families can see t hemselves reflected in one another.\n\nSubmissions are also open to advoca tes and providers—including physicians\, nurses\, and genetic counselors —who want to share their perspective through art.\n\nHow to participate: \n• First\, fill out the interest form\n• Submit an original piece of artwork (any medium)\n• Include a short personal story to accompany your work\n• Submit your materials via email to shilp@sketchnf.org END:VEVENT BEGIN:VEVENT UID:3@gauchercommunity.org DTSTART;TZID=America/Phoenix;VALUE=DATE:20261011 DTEND;TZID=America/Phoenix;VALUE=DATE:20261014 DTSTAMP:20260521T145456Z URL:https://www.gauchercommunity.org/events/gaucher-community-patient-fami ly-conference-in-phoenix-arizona/ SUMMARY:Gaucher Community Patient & Family Conference in Phoenix\, Arizona DESCRIPTION:Marriott Phoenix Chandler\n1600 South Price Road\nChandler\, Ar izona\, USA\, 85286\n\nNothing can replace the connections you make in per son with others who are living the same experiences you are. Attend worksh ops\, ask questions of Gaucher medical experts\, learn of new research and drug studies and network with your peers.\n\nAttending the Gaucher Commun ity Alliance Patient &\; Family Conference gives patients\, caregivers\ , teens\, young adults\, and families a chance to feel informed\, supporte d\, and connected in a way that is hard to find anywhere else.\n\nWe hope to see you there!\n\n Connect with others who truly understand Gaucher di sease\n Learn directly from Gaucher medical experts and researchers\n Ga in practical tools for everyday life\n Help children and teens feel less alone\n Hear powerful patient stories\n Become empowered advocates\n Bu ild lasting relationships and support networks\n Feel hope for the future \n\nAgenda:\nSunday\, October 11 (Patients and families only)\n\n Check-I n and Registration\n Welcome Dinner and Program\n Teen Hangout\n\nMonday \, October 12\n\n Morning workshops for patients and families only\n Lun ch and program\n Afternoon plenary session open to all\n Type 2/3 Family Support Session\n Dinner and program open to all\n Sponsor Booths\, Net working\, and More!\n\nTuesday\, October 13\n\n Morning plenary session o pen to all\n Lunch and program\n Live raffle\n Afternoon workshops open to all\n Sponsor Booths\, Networking\, and More!\n Casual dinner offsit e open to all\n\nTo register for the conference\, apply for a travel sch olarship\, and make your hotel reservation\, click on the links below.\n\ n Register for the conference\n Apply for a travel scholarship\n Make y our hotel reservation\n\n***You must register for the conference in order to apply for a travel scholarship. \n\nGCA recognizes the importance of i n-person connection for rare disease families and therefore makes scholars hips are available to ease the burden for families to travel to attend the conference. Families are eligible for one scholarship per family in the a mount of: $1\,000 for one attendee\, $1\,400 for 2 attendees\, and $1\,800 for 3+ attendees per family. Priority for scholarships is given to worksh op facilitators and are then awarded on a first come\, first serve basis a nd will be paid after conference attendance. Note: Scholarship application s will not be reviewed unless a registration form has been completed. ATTACH;FMTTYPE=image/jpeg:https://www.gauchercommunity.org/wp-content/uplo ads/2026/04/conference-2026-logo.png END:VEVENT BEGIN:VTIMEZONE TZID:America/New_York X-LIC-LOCATION:America/New_York BEGIN:DAYLIGHT DTSTART:20260308T030000 TZOFFSETFROM:-0500 TZOFFSETTO:-0400 TZNAME:EDT END:DAYLIGHT END:VTIMEZONE BEGIN:VTIMEZONE TZID:America/Phoenix X-LIC-LOCATION:America/Phoenix BEGIN:STANDARD DTSTART:20251011T000000 TZOFFSETFROM:-0700 TZOFFSETTO:-0700 TZNAME:MST END:STANDARD END:VTIMEZONE END:VCALENDAR