BEGIN:VCALENDAR VERSION:2.0 PRODID:-//wp-events-plugin.com//7.4.8//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:7@gauchercommunity.org DTSTART;TZID=America/North_Dakota/Center:20260727T180000 DTEND;TZID=America/North_Dakota/Center:20260727T210000 DTSTAMP:20260716T142610Z URL:https://www.gauchercommunity.org/events/all-about-bone-imaging-in-gauc her-disease/ SUMMARY:All About Bone Imaging in Gaucher Disease DESCRIPTION:An event by Sanofi:\n\n"Join us for an interactive presentation on bone health and imaging in Gaucher disease\, led by expert radiologist Dr. Ravi Kamath. Bone disease affects up to 82% of people with Gaucher. T his session will help you understand different bone imaging techniques and how bone imaging scores can assess bone health. Don't miss this opportuni ty to ask questions and participate in real-time!"\n\nBartolino's Twin Oak s\n1304 Big Bend Rd\, Manchester\, MO 63021\n\nMonday\, July 27\, 2026 06: 00 PM - 09:00 PM CDT END:VEVENT BEGIN:VEVENT UID:8@gauchercommunity.org DTSTART;TZID=America/New_York:20260916T133000 DTEND;TZID=America/New_York:20260916T150000 DTSTAMP:20260813T201550Z URL:https://www.gauchercommunity.org/events/triage-cancer-webinar-registra tion-understanding-changes-to-medicaid-the-marketplace-what-health-advocac y-organizations-need-to-know/ SUMMARY:Triage Cancer Webinar Registration | Understanding Changes to Medic aid & the Marketplace: What Health Advocacy Organizations Need to Know DESCRIPTION:Medicaid and Marketplace coverage are undergoing some of the mo st significant changes in decades\, and people with chronic or serious med ical conditions and their families will be directly affected.\n\nTailored for staff and leadership of advocacy organizations who want to stay up-to- date and be better equipped to help their communities\, this webinar will walk through the most significant recent and upcoming changes to Medicaid\ , Medicare\, and Marketplace coverage into 2027.\n\nWe will break down the policy changes in plain language\; share practical steps your organizatio n can take to help people stay insured and continue to access the care tha t they need\; and offer tools and resources your organization can use to s upport your community.\n\nSeptember 16\, 2026\n\n10:30am PT / 12:30pm CT / 1:30pm ET\nDuration: 90 minutes\nCourse Level: Beginner\n\nLearn more and register here. END:VEVENT BEGIN:VEVENT UID:3@gauchercommunity.org DTSTART;TZID=America/Phoenix;VALUE=DATE:20261011 DTEND;TZID=America/Phoenix;VALUE=DATE:20261014 DTSTAMP:20260916T154445Z 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\nTo register for the conference\, apply for a trave l scholarship\, and make your hotel reservation\, click on the links bel ow.\n\n Register for the conference\n Apply for a travel scholarship\n Make your hotel reservation\n\nNothing can replace the connections you mak e in person with others who are living the same experiences you are. Atten d workshops\, ask questions of Gaucher medical experts\, learn of new rese arch and drug studies and network with your peers.\n\nAttending the Gauche r Community Alliance Patient &\; Family Conference gives patients\, car egivers\, teens\, young adults\, and families a chance to feel informed\, supported\, and connected in a way that is hard to find anywhere else.\n\n We hope to see you there!\n\n Connect with others who truly understand Ga ucher disease\n Learn directly from Gaucher medical experts and researche rs\n Gain practical tools for everyday life\n Help children and teens fe el less alone\n Hear powerful patient stories\n Become empowered advocat es\n Build lasting relationships and support networks\n Feel hope for th e future\n\nMany renowned Gaucher experts will be presenting\, serving on discussion panels\, facilitating separate tracks and workshops\, and holdi ng separate Q&\;A sessions for patients and families.\nAgenda:\n[dflip id="7157"][/dflip]\n\nTo register for the conference\, apply for a travel  scholarship\, and make your hotel reservation\, click on the links belo w.\n\n Register for the conference\n Apply for a travel scholarship\n M ake your hotel reservation\n\n***You must register for the conference in o rder to apply for a travel scholarship. \n\nGCA recognizes the importance of in-person connection for rare disease families and therefore makes sch olarships are available to ease the burden for families to travel to atten d the conference. Families are eligible for one scholarship per family in the amount 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 w orkshop facilitators and are then awarded on a first come\, first serve ba sis and will be paid after conference attendance. Note: Scholarship applic ations will not be reviewed unless a registration form has been completed. \nPlatinum Sponsor\n\nGold Sponsor\n\nSponsors\n \;\n\n\n\n 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/North_Dakota/Center X-LIC-LOCATION:America/North_Dakota/Center BEGIN:DAYLIGHT DTSTART:20260308T030000 TZOFFSETFROM:-0600 TZOFFSETTO:-0500 TZNAME:CDT 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