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X-WR-CALNAME:National Organization for Rare Disorders
X-ORIGINAL-URL:https://rarediseases.org
X-WR-CALDESC:Events for National Organization for Rare Disorders
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TZID:America/New_York
BEGIN:DAYLIGHT
TZOFFSETFROM:-0500
TZOFFSETTO:-0400
TZNAME:EDT
DTSTART:20250309T070000
END:DAYLIGHT
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TZOFFSETFROM:-0400
TZOFFSETTO:-0500
TZNAME:EST
DTSTART:20251102T060000
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20250710
DTEND;VALUE=DATE:20250713
DTSTAMP:20250711T050514
CREATED:20250708T174640Z
LAST-MODIFIED:20250708T174640Z
UID:10000903-1752105600-1752364799@rarediseases.org
SUMMARY:CTNNB1 Connect and Cure Conference
DESCRIPTION: NORD is proud to share details about the upcoming CTNNB1 Connect and Cure Conference\, taking place July 10–12\, 2025 in Waltham\, MA — an international gathering focused on CTNNB1 Syndrome\, a rare neurodevelopmental disorder. \nThis unique event brings together families\, clinicians\, and researchers to accelerate breakthroughs and build community. \n Conference Highlights\n Science Day (July 11): Leading experts in genetics and neurology present the latest on CTNNB1-targeted therapies.\n Family Day (July 12): Panels\, education\, and resources designed for caregivers and advocates.\n Keynotes\, Q&As\, and celebrations highlighting progress across the therapeutic pipeline. \nAs champions of the rare disease community\, we’re proud to support CTNNB1 Connect and Cure in amplifying awareness and collaboration. \n Learn more: https://curectnnb1.org \n#RareDisease #CTNNB1Syndrome #ConnectAndCure #NORDRare #RareCommunity #GeneticResearch #CaregiverSupport #NeurodevelopmentalDisorders #ScienceForRare
URL:https://rarediseases.org/event/ctnnb1-connect-and-cure-conference/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250713T140000
DTEND;TZID=America/New_York:20250713T160000
DTSTAMP:20250711T050514
CREATED:20250623T203405Z
LAST-MODIFIED:20250623T204612Z
UID:10000893-1752415200-1752422400@rarediseases.org
SUMMARY:IPPF South Florida Virtual Support Group Meeting
DESCRIPTION:Connect Virtually with Other Pemphigus and Pemphigoid Patients and Caregivers in South Florida on July 13th. \nLiving with pemphigus or pemphigoid is hard enough\, but when you feel alone it seems even harder. You are not alone! Register at: https://fundraise.pemphigus.org/group_sfl_july_2025
URL:https://rarediseases.org/event/ippf-south-florida-virtual-support-group-meeting/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20250717
DTEND;VALUE=DATE:20250718
DTSTAMP:20250711T050514
CREATED:20250627T154755Z
LAST-MODIFIED:20250627T154755Z
UID:10000896-1752710400-1752796799@rarediseases.org
SUMMARY:KdVS Awareness Day July 17th
DESCRIPTION:Koolen-de Vries Syndrome (KdVS) is a rare genetic condition caused by a microdeletion on chromosome 17 or a variant in the KANSL1 gene. First identified in 2006\, KdVS affects approximately 1 in 30\,000 individuals worldwide. It is characterized by developmental delays\, low muscle tone\, intellectual disability\, and distinctive facial features. Many individuals with KdVS also experience epilepsy\, congenital heart defects\, feeding challenges\, and differences in behavior and learning. Because the condition can vary widely from person to person\, diagnosis often requires genetic testing. \nThough KdVS is rare\, the impact on families is significant and growing awareness is critical. The Koolen-de Vries Syndrome Foundation (KdVSF) works to support families\, fund research\, and connect the global KdVS community. With only 18 years of research behind us\, there’s still so much to learn about the long-term needs and care strategies for those living with KdVS. Greater visibility means earlier diagnosis\, better resources\, and stronger support for families navigating this complex journey.  For more information about KdVS\, please visit www.kdvsfoundation.org. \nHashtags to use for KdVS Awareness Day: #KdVS #KoolendeVrieSyndrome #KdVSAwareness #KdVSAwarenessDay
URL:https://rarediseases.org/event/kdvs-awareness-day-july-17th/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250717T180000
DTEND;TZID=America/New_York:20250717T190000
DTSTAMP:20250711T050514
CREATED:20250626T164913Z
LAST-MODIFIED:20250626T164913Z
UID:10000895-1752775200-1752778800@rarediseases.org
SUMMARY:Community Conversation: Finding Strength in Self-Acceptance
DESCRIPTION:Join us for a virtual community conversation on Thursday\, July 17 at 6pm ET! In this uplifting and supportive community conversation\, panelists will explore how to embrace life as it is. Together\, we’ll discuss how accepting our realities can lead to greater emotional well-being\, stronger self-advocacy\, and deeper connections with others. Whether you are newly diagnosed or years into your rare disease journey\, this virtual event will help instill that you are more than your diagnosis. Click here to register. 
URL:https://rarediseases.org/event/community-conversation-finding-strength-in-self-acceptance/
CATEGORIES:NORD Events,Rare Action Network Events
ATTACH;FMTTYPE=image/png:https://rarediseases.org/wp-content/uploads/2025/06/Social-Media-Graphic.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20250718
DTEND;VALUE=DATE:20250720
DTSTAMP:20250711T050514
CREATED:20250226T214207Z
LAST-MODIFIED:20250521T163356Z
UID:10000746-1752796800-1752969599@rarediseases.org
SUMMARY:2025 TSSUS National Turner Syndrome Conference
DESCRIPTION:The 2025 TSSUS National Turner Syndrome Conference will be held in Portland\, Oregon on July 18-19\, 2025. This annual event is a program of the Turner Syndrome Society of the United States and is in it’s 34th year\, The TSSUS conference brings together individuals with Turner syndrome\, their families\, and TS experts in a welcoming and fun environment. Several of the world’s leading TS experts will be on hand holding educational sessions and health screenings. Social activities include a banquet and DJ dance party\, creative activities\, guided social hours and optional activities and excursions. There is a vibrant youth program for children aged 3-18 for both those with TS and their siblings. Register here:  https://www.turnersyndrome.org/2025conference
URL:https://rarediseases.org/event/2025-tssus-national-turner-syndrome-conference/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20250718
DTEND;VALUE=DATE:20250721
DTSTAMP:20250711T050514
CREATED:20250304T164301Z
LAST-MODIFIED:20250521T163357Z
UID:10000755-1752796800-1753055999@rarediseases.org
SUMMARY:National Scleroderma Conference
DESCRIPTION:As you may know\, this year’s National Scleroderma Conference will be held in St. Louis\, Missouri\, from July 18-20\, 2025. This year’s conference\, with nearly 50 sessions\, workshops\, and networking opportunities will attract 500+people to our live\, in-person event\, including those living with scleroderma\, caregivers\, family members\, physicians\, and research scientists. \n  \nConference information\, including the registration link can be found HERE. \n  \nTo see the Foundation’s prospectus\, click HERE. \n  \nAnd finally\, to register as an exhibitor\, please complete this FORM. (You will have the opportunity to pay online or pay by check. Those selecting pay by check will be sent a separate email with payment instructions.) \n  \nPlease feel free to reach out with any questions and thank you for all you do to support those living with scleroderma. \n  \n 
URL:https://rarediseases.org/event/national-scleroderma-conference/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250719T080000
DTEND;TZID=America/New_York:20250719T170000
DTSTAMP:20250711T050514
CREATED:20250530T153628Z
LAST-MODIFIED:20250530T153628Z
UID:10000820-1752912000-1752944400@rarediseases.org
SUMMARY:Aplastic Anemia and MDS International Foundation Patient and Family Conferences
DESCRIPTION:AAMDSIF hosts Patient and Family Conferences around the United States each year. Conferences are free to attend and include presentations by the world’s leading medical experts in rare blood cancers and bone marrow failure diseases. It is also an incredible and important opportunity for patients and caregivers to connect with one another in person and share support\, answers and hope. The upcoming conferences will be held in San Francisco (CA) Bay Area on July 19th \, Boston (MA) on September 27th \, and Chapel Hill (NC) on October 18th . To learn more about the conferences\, visit our website\, www.aamds.org or call 301.279.7202.
URL:https://rarediseases.org/event/aplastic-anemia-and-mds-international-foundation-patient-and-family-conferences/2025-07-19/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250719T150000
DTEND;TZID=America/New_York:20250719T170000
DTSTAMP:20250711T050514
CREATED:20250530T155037Z
LAST-MODIFIED:20250530T155037Z
UID:10000828-1752937200-1752944400@rarediseases.org
SUMMARY:🌟 Raymond A. Wood Foundation Survivor Support Group – Monthly Virtual Meetings
DESCRIPTION:Survivor Support Group – Monthly Virtual Meetings\nDates: Third Saturday of each monthTime: 3:00 PM ETLocation: Online via ZoomRegistration: Register here \nThe Raymond A. Wood Foundation’s Survivor Support Group offers a monthly virtual gathering for adult survivors of hypothalamic-pituitary brain tumors. Moderated by brain tumor survivor Jason Burris\, these sessions provide a safe space to share experiences\, discuss challenges\, and connect with others who understand your journey. \nEach meeting includes breakout sessions tailored to different age groups\, ensuring that all participants can engage in meaningful conversations. Whether you’re seeking support\, camaraderie\, or simply a place to be heard\, this group is here for you. \nParticipation is free\, but registration is required. For more information or assistance\, please contact outreach@rawoodfoundation.org.
URL:https://rarediseases.org/event/%f0%9f%8c%9f-raymond-a-wood-foundation-survivor-support-group-monthly-virtual-meetings/2025-07-19/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20250725
DTEND;VALUE=DATE:20250728
DTSTAMP:20250711T050514
CREATED:20250623T204845Z
LAST-MODIFIED:20250623T204904Z
UID:10000894-1753401600-1753660799@rarediseases.org
SUMMARY:Platelet Disorder Support Association (PDSA) 25th Annual ITP Conference
DESCRIPTION:We’re More Than Our Platelet Counts—Let’s Talk Immune Thrombocytopenia Together! Join a community that speaks your language. \nThe Platelet Disorder Support Association (PDSA) is hosting its 25th Annual ITP Conference that brings patients\, families\, and experts together to talk real-life solutions and share lived experiences in Philadelphia\, PA July 25-27th. \nYou’ll hear from cutting-edge researchers and seasoned clinicians who understand the challenges of ITP. Walk away with answers—and maybe even a few new friends. Learn more at \npdsa.org/conferences\n#ITPConference #ITPresources #ITPWarriors
URL:https://rarediseases.org/event/platelet-disorder-support-association-pdsa-25th-annual-itp-conference/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250726T150000
DTEND;TZID=America/New_York:20250726T180000
DTSTAMP:20250711T050514
CREATED:20250623T202758Z
LAST-MODIFIED:20250623T202758Z
UID:10000891-1753542000-1753552800@rarediseases.org
SUMMARY:Northern California IN-PERSON Support Group Meeting  Saturday\, July 26\, 2025
DESCRIPTION:Connect In Person with other Pemphigus and Pemphigoid Patients and Caregivers in the Northern California area on July 26th! Living with pemphigus or pemphigoid is hard enough\, but when you feel alone it seems even harder. You are not alone.  \n\nRegister here! \nhttps://fundraise.pemphigus.org/groups_nocal_July_2025\n\n\n\n• 12:00pm – 3:00pm PST UC Davis Dermatology Conference Center\, 3301 C Street Sacramento\, CA 95816
URL:https://rarediseases.org/event/northern-california-in-person-support-group-meeting-saturday-july-26-2025/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20250730
DTEND;VALUE=DATE:20250731
DTSTAMP:20250711T050514
CREATED:20250627T155632Z
LAST-MODIFIED:20250627T155632Z
UID:10000897-1753833600-1753919999@rarediseases.org
SUMMARY:Multiple Sulfatase Deficiency World Day July 30th
DESCRIPTION:MSD World Day\, celebrated on July 30\, is a day to acknowledge Multiple Sulfatase Deficiency\, to shine a spotlight on those impacted by this ultra-rare disease\, and to raise awareness around the world. Commemorations include a fundraising campaign\, state proclamations\, building/landmark illuminations\, and other events planned by our partner MSD foundations in Argentina\, Ireland\, Spain\, and Florida and Missouri in the United States. More information here: https://curemsd.org/msd-world-day/ 
URL:https://rarediseases.org/event/multiple-sulfatase-deficiency-world-day-july-30th/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20250731
DTEND;VALUE=DATE:20250801
DTSTAMP:20250711T050514
CREATED:20250709T191550Z
LAST-MODIFIED:20250709T191550Z
UID:10000905-1753920000-1754006399@rarediseases.org
SUMMARY:SUBMISSION DEADLINE - 2025 Think Tank on Advancing Precision Medicine in Rare Cancers
DESCRIPTION:TargetCancer Foundation is pleased to invite early investigators (within 5 years of fellowship or terminal degree) from local universities\, medical\, and scientific institutions to submit abstracts for the upcoming Think Tank on Advancing Precision Medicine in Rare Cancers on October 29\, 2025 in Boston\, MA. This event aims to highlight groundbreaking research and innovative approaches in the field of rare cancers\, fostering collaboration among emerging scientists and established experts. \nClick here for submission guidelines\, and visit targetcancer.org for more information.
URL:https://rarediseases.org/event/submission-deadline-2025-think-tank-on-advancing-precision-medicine-in-rare-cancers/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250801T100000
DTEND;TZID=America/New_York:20250801T150000
DTSTAMP:20250711T050514
CREATED:20250425T194719Z
LAST-MODIFIED:20250530T145130Z
UID:10000797-1754042400-1754060400@rarediseases.org
SUMMARY:Cure LBSL externally-led Patient-Focused Drug Development meeting on Aug. 1
DESCRIPTION:Cure LBSL will host the LBSL externally-led Patient-Focused Drug Development meeting on Aug. 1 at the National Building Museum in Washington from 10 a.m. to 3 p.m. This hybrid event is open to everyone and will elevate the voices and perspectives of those living with LBSL. Cure LBSL also welcomes LBSL patients from around the world to participate in this milestone event for their community! Register online at www.curelbsl.org/el-pfdd
URL:https://rarediseases.org/event/cure-lbsl-externally-led-patient-focused-drug-development-meeting-on-aug-1/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20250815
DTEND;VALUE=DATE:20250818
DTSTAMP:20250711T050514
CREATED:20250530T154600Z
LAST-MODIFIED:20250530T154600Z
UID:10000825-1755216000-1755475199@rarediseases.org
SUMMARY:🌟 2025 LFSA Youth & Young Adult Workshop
DESCRIPTION:🌟 2025 LFSA Youth & Young Adult Workshop\nDates: August 15–17\, 2025Location: Boston\, MAEligibility: Ages 13–25 with Li-Fraumeni Syndrome (LFS)Registration: Interest Form \nThe LFSA Youth & Young Adult Workshop is a transformative event designed to empower young individuals living with Li-Fraumeni Syndrome. This workshop offers a unique opportunity to connect with peers\, engage with experts\, and participate in activities that foster resilience and community.LFS Association+2LFS Association+2LFS Association+2 \nHighlights: \n\n\nInteractive sessions with leading LFS specialists \n\n\nWorkshops on coping strategies\, wellness\, and advocacy \n\n\nOpportunities to build lasting friendships with others who understand your journey \n\n\nWhether you’re seeking support\, knowledge\, or connection\, this workshop is an invaluable experience for young people navigating life with LFS. Space is limited\, so be sure to submit your interest form today!
URL:https://rarediseases.org/event/%f0%9f%8c%9f-2025-lfsa-youth-young-adult-workshop/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20250823
DTEND;VALUE=DATE:20250831
DTSTAMP:20250711T050514
CREATED:20250627T160216Z
LAST-MODIFIED:20250627T160216Z
UID:10000898-1755907200-1756598399@rarediseases.org
SUMMARY:2025 Virtual Digestive Health Wellness & Walk
DESCRIPTION:The 2025 Virtual Digestive Health Wellness & Walk is a week-long annual charitable event to raise money to support gastrointestinal illness research. The annual event has so far raised $180\,000 to support GI illness research and we plan for the 5th year to be our best so far! \nThe 2025 event will be August 23\, 2025 – August 30\, 2025. Event registration will open on August 1\, 2025. \nLike a traditional walk\, participants register to be active to get credit for steps taken during the event. However\, this event goes beyond a step goal by also awarding points to participants for self-care\, wellness\, and outreach activities. #Moves4GIhealth25
URL:https://rarediseases.org/event/2025-virtual-digestive-health-wellness-walk/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20250831
DTEND;VALUE=DATE:20250901
DTSTAMP:20250711T050514
CREATED:20250627T164009Z
LAST-MODIFIED:20250627T164009Z
UID:10000899-1756598400-1756684799@rarediseases.org
SUMMARY:TBCK Foundation Collaborative Fundraising Gala for Rare Disease
DESCRIPTION:TBCK Foundation \nBLACK TIES FOR RARE AUGUST \nA RARE DISEASE GALA \nSave the date for a formal family friendly event celebrating rare disease. \nSunday \, August 31\, 2025 \n5 -10pm Philadelphia Airport Marriot \nGala Save The Date 2025 Postcard
URL:https://rarediseases.org/event/tbck-foundation-collaborative-fundraising-gala-for-rare-disease/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20250901
DTEND;VALUE=DATE:20250902
DTSTAMP:20250711T050514
CREATED:20250708T173301Z
LAST-MODIFIED:20250708T173301Z
UID:10000901-1756684800-1756771199@rarediseases.org
SUMMARY:CTX International Workshop Series
DESCRIPTION:Welcome to the 2025 CTX International Workshop Series being held on Monday\, September 1 in Kyoto\, Japan. This meeting is being held as a satellite meeting prior to the 2025 International Congress of Inborn Errors of Metabolism (ICIEM) meeting on September 2- 6\, 2025. \nOn behalf of the CTX Alliance and the organizing committee\, it is our pleasure to invite you to the workshops exclusively dedicated to cerebrotendinous xanthomatosis (CTX). Following the success of the first-ever CTX International Scientific Meeting held in Jerusalem in August 2023\, the CTX Alliance is hosting this one-day workshop to build on critical collaborations and advance CTX research and patient care. \nDate & Time: Monday\, September 1\, from 8:15 am to 3:45 pm.\nLocation: The Prince Kyoto Takaragaike – Royal Room (meeting) + Rose Room (lunch)\nRegistration: Registration is free and open to all stakeholders\, including patients and industry representatives. \nThe CTX Alliance is grateful to the ICIEM for providing the opportunity to host this meeting. We anticipate many of our attendees will be leaders in patient care\, biochemical and genetic diagnosis\, research\, nutrition\, pharmacy\, allied health professionals\, and palliative care. It is our intention to make attending this satellite CTX meeting a convenient and educational opportunity for those already attending the SSIEM. \nPlease click the link to register. Registrations will be accepted until capacity is reached. \nThe workshop agenda will focus on three key areas: \nCTX Patient Registry\nLed by Dr. Hidde Huidekoper and CTX patient advocates Abbey Cook and Jean Pickford\, this session will focus on establishing a framework and identifying optimal outcome measures for a future CTX registry. \nCTX Clinical Severity Score\nLed by Drs. Andrea DeBarber and Bob Steiner\, this session will aim to develop a standardized clinical severity score to facilitate consistent data collection and analysis across studies\, and to try to enable improved genotype/phenotype correlations. \nExploring Potential CTX Carrier Clinical Manifestations\nLed by Drs. Antonio Federic and Tzipora Falik-Zaccai\, this session will explore potential clinical manifestations in CTX carriers. \nBuilding on the momentum established in 2023\, the CTX Alliance continues to expand international engagement with physicians\, scientists\, patients\, advocates\, and industry leaders to drive progress in CTX care and research. The overarching goal of the CTX International Workshop Series is to catalyze global research and clinical collaborations for CTX\, advancing our knowledge to improve outcomes for CTX patients and their families. We are honored and excited to provide this opportunity to foster international collaboration for this rare disease.
URL:https://rarediseases.org/event/ctx-international-workshop-series/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20250905
DTEND;VALUE=DATE:20250908
DTSTAMP:20250711T050514
CREATED:20250226T220928Z
LAST-MODIFIED:20250521T163357Z
UID:10000749-1757030400-1757289599@rarediseases.org
SUMMARY:Charcot-Marie-Tooth Association Patient & Research Summit September
DESCRIPTION:The 2025 CMTA Patient & Research Summit will be held on Friday\, September 5th – Sunday\, September 7th at the Embassy Suites at Indianapolis Airport in Plainfield\, Indiana: https://summit.cmtausa.org\nThe CMTA Summit offers life-improving presentations on living well with CMT and will provide a comprehensive update on CMTA’s Strategy To Accelerate Research (STAR) programs and initiatives\, presented by top CMT researchers.
URL:https://rarediseases.org/event/charcot-marie-tooth-association-patient-research-summit-september/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20250912
DTEND;VALUE=DATE:20250913
DTSTAMP:20250711T050514
CREATED:20250530T151300Z
LAST-MODIFIED:20250530T151645Z
UID:10000817-1757635200-1757721599@rarediseases.org
SUMMARY:🔬 DTRF International Research Workshop
DESCRIPTION:🔬 DTRF International Research Workshop\nDate: Friday\, September 12\, 2025Location: Northwestern Medicine: Prentice Women’s Hospital\, Chicago\, ILDetails: Designed for researchers and medical professionals\, this workshop presents the latest information on desmoid treatments and research. It serves as a forum to share findings\, develop collaborations\, and identify research priorities. In-person and virtual attendance options are available.🔗 Learn more and register
URL:https://rarediseases.org/event/%f0%9f%94%ac-dtrf-international-research-workshop/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20250913
DTEND;VALUE=DATE:20250914
DTSTAMP:20250711T050514
CREATED:20250530T151107Z
LAST-MODIFIED:20250530T151645Z
UID:10000816-1757721600-1757807999@rarediseases.org
SUMMARY:🧬 DTRF Annual Patient Meeting
DESCRIPTION:Date: Saturday\, September 13\, 2025Location: Northwestern Medicine: Prentice Women’s Hospital\, Chicago\, ILDetails: Join us for the cornerstone of the Together We Will Weekend. This meeting features educational presentations by clinicians and researchers\, a talk by a desmoid patient\, and ample opportunities for networking. Content is tailored for patients\, caregivers\, and physicians. The event will be recorded and available online afterward.🔗 Learn more and register
URL:https://rarediseases.org/event/%f0%9f%a7%ac-dtrf-annual-patient-meeting/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20250917
DTEND;VALUE=DATE:20250922
DTSTAMP:20250711T050514
CREATED:20250312T143029Z
LAST-MODIFIED:20250521T163807Z
UID:10000765-1758067200-1758499199@rarediseases.org
SUMMARY:International Scientific Symposium 2025 | Toronto\, Canada Pathways to Progress: A Decade of Insights and Innovations in EDS and HSD
DESCRIPTION:In-person in Toronto\, Canada\, with virtual attendance options  \n\n\n\n\n\n\n\n\n\n\n\n\nJoin us for the 2025 International Scientific Symposium\, taking place from September 17-21\, 2025 in Toronto\, Canada—a hybrid event designed specifically for healthcare professionals. This symposium will bring together the world’s leading researchers\, clinicians\, and experts in Ehlers-Danlos Syndromes (EDS) and Hypermobility Spectrum Disorders (HSD) to share groundbreaking discoveries\, foster collaboration\, and inspire the next generation of scientific and clinical advancements. \n\n\n\n\n\n\nWho can attend the International Scientific Symposium? \n\n\n\n\nThis event is intended for health professionals\, with the exception of the final day\, on Sunday\, September 21\, where we open the audience to community members\, their families\, and caregivers. We strongly encourage clinicians and researchers to attend this meeting – the multidisciplinary nature of the conference provides an opportunity to talk to specialists from many different fields including basic scientists\, geneticists\, internists\, orthopedic and vascular surgeons\, dentists\, pediatricians\, physiotherapists\, genetic counselors\, nurses\, and others working with EDS and HSD. All 5 days are included in the price of a general entry ticket.  \n\n\n\n\n\n\n\n\n\n\nHow can I watch this event?\n\n\n\n\nThis event is hybrid and will be delivered virtually via Zoom webinar. Attendees are welcome to join from anywhere in the world. Registration includes lifetime access to the event recordings and materials.  \nWe recommend using worldtimebuddy.com or your preferred time zone converter to find the event time in your location.    \nIf you have any questions\, please contact our events team.   
URL:https://rarediseases.org/event/international-scientific-symposium-2025-toronto-canada-pathways-to-progress-a-decade-of-insights-and-innovations-in-eds-and-hsd/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20250928
DTEND;VALUE=DATE:20251001
DTSTAMP:20250711T050514
CREATED:20250311T202216Z
LAST-MODIFIED:20250521T163807Z
UID:10000762-1759017600-1759276799@rarediseases.org
SUMMARY:41ST ANNUAL MEETING OF THE HISTIOCYTE SOCIETY
DESCRIPTION:41ST ANNUAL MEETING OF THE HISTIOCYTE SOCIETY \n\n\n\n\nThe 41st Annual Meeting of the Histiocyte Society will take place September 28-30\, 2025 in Seattle\, WA USA and online\nwith Board and Committee meetings taking place on September 27. \nRegistration is now open! \n\n\n\n\nKim Nichols\, Histiocyte Society President\, welcomes you to the 41st Annual Meeting of the Histiocyte Society here.
URL:https://rarediseases.org/event/41st-annual-meeting-of-the-histiocyte-society/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20250929
DTEND;VALUE=DATE:20251001
DTSTAMP:20250711T050514
CREATED:20250708T174331Z
LAST-MODIFIED:20250708T174331Z
UID:10000902-1759104000-1759276799@rarediseases.org
SUMMARY:International Conference on Research in Williams syndrome
DESCRIPTION:Location\nThe Study at University City \n20 S. 33rd St. \nPhiladelphia\, PA 19104 \nArmellino Center of Excellence for Williams syndrome at the University of Pennsylvania and Children’s Hospital of Philadelphia invites researchers\, clinicians and other professionals interested in Williams syndrome to participate in the International Conference on Research in Williams syndrome. This event will take place on September 29-30\, 2025 at the Study Hotel in Philadelphia\, PA. We are encouraging abstracts submissions (posters accepted on rolling basis\, abstracts for talks accepted for consideration until August 1\, 2025). This event is CME accredited. \nhttps://www.med.upenn.edu/williams-syndrome/2025-international-research-conference-on-williams-syndrome.html
URL:https://rarediseases.org/event/international-conference-on-research-in-williams-syndrome/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20250930
DTEND;VALUE=DATE:20251001
DTSTAMP:20250711T050514
CREATED:20250521T183025Z
LAST-MODIFIED:20250521T183025Z
UID:10000808-1759190400-1759276799@rarediseases.org
SUMMARY:Rare Cancer Day: September 30
DESCRIPTION:Rare Cancer Day: September 30 \nRare Cancer Day is an annual awareness day devoted to shining a light on rare cancers and the issues people living with them face. Spearheaded by the NORD Rare Cancer Coalition® every year since 2017\, Rare Cancer Day is observed on September 30 to highlight the challenges patients face and to unify individuals living with rare cancers for awareness and early diagnosis. Join the Rare Cancer Coalition in-person\, or virtually at one of our Rare Cancer Day events. Click here to learn more. \n 
URL:https://rarediseases.org/event/rare-cancer-day-september-30/
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20251019
DTEND;VALUE=DATE:20251020
DTSTAMP:20250711T050514
CREATED:20250521T182956Z
LAST-MODIFIED:20250521T182956Z
UID:10000807-1760832000-1760918399@rarediseases.org
SUMMARY:Annual Rare Cancer Coalition Reception: October 19
DESCRIPTION:Annual Rare Cancer Coalition Reception: October 19 \nThe National Organization for Rare Disorders (NORD) Rare Cancer Coalition is hosting a special networking reception at the NORD Rare Diseases & Orphan Products Breakthrough Summit on Sunday\, October 19.  The reception offers dedicated networking opportunities for patient organizations\, academic research institutions\, clinicians\, regulators\, and industry partners working in the field of rare cancers. \n  \nThis event will be held in person at the NORD Rare Disease Breakthrough Summit conference hotel\, and is open to patient organizations\, academic research institutions\, clinicians\, regulators\, and industry partners working in the field of rare cancers. Please contact membership@rarediseases.org to be added to the invitation list. \n 
URL:https://rarediseases.org/event/annual-rare-cancer-coalition-reception-october-19/
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20251019
DTEND;VALUE=DATE:20251022
DTSTAMP:20250711T050514
CREATED:20250708T191211Z
LAST-MODIFIED:20250708T191211Z
UID:10000904-1760832000-1761091199@rarediseases.org
SUMMARY:NORD Rare Diseases & Orphan Products Breakthrough Summit
DESCRIPTION:The annual NORD Rare Diseases & Orphan Products Breakthrough Summit\, held in Washington\, DC on October 19-21\, 2025\, is the largest and most meaningful multi-stakeholder event of its kind\, historically featuring over 900 participants\, 20 speakers from the FDA\, participation from over 80 patient organizations and the Pharm/Bio industry’s foremost experts in orphan drug product innovation\, investment\, and commercialization. Please visit https://nordsummit to register.
URL:https://rarediseases.org/event/nord-rare-diseases-orphan-products-breakthrough-summit/
LOCATION:Grand Hyatt in Washington\, D.C.\, 1000 H Street NW\, Washington\, DC\, United States
CATEGORIES:NORD Events
ATTACH;FMTTYPE=image/png:https://rarediseases.org/wp-content/uploads/2025/07/NEW-Summit-Logo-FNL-01.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20251029
DTEND;VALUE=DATE:20251030
DTSTAMP:20250711T050514
CREATED:20250709T191704Z
LAST-MODIFIED:20250709T191704Z
UID:10000906-1761696000-1761782399@rarediseases.org
SUMMARY:2025 Think Tank on Advancing Precision Medicine in Rare Cancers
DESCRIPTION:2025 Think Tank on Advancing Precision Medicine in Rare Cancers \n \nTargetCancer Foundation’s Think Tank on Advancing Precision Medicine in Rare Cancers is a highly interactive meeting that brings together clinicians\, researchers\, industry representatives\, advocates\, and patients to collaborate on common challenges in rare cancer research and treatment. \nLeveraging the successful Think Tank model established through over a decade of TargetCancer Foundation meetings\, it creates a collaborative environment where diverse perspectives and ideas thrive. This meeting also builds on the progress made through TargetCancer Foundation’s TCF-001 TRACK study\, a nationwide\, decentralized\, patient-driven clinical trial studying precision medicine in rare cancers. \n  \nClick here for registration options and more information.
URL:https://rarediseases.org/event/2025-think-tank-on-advancing-precision-medicine-in-rare-cancers/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251111T083000
DTEND;TZID=America/New_York:20251111T143000
DTSTAMP:20250711T050514
CREATED:20250516T142257Z
LAST-MODIFIED:20250530T154148Z
UID:10000803-1762849800-1762871400@rarediseases.org
SUMMARY:Chondrosarcoma Foundation Think Tank
DESCRIPTION:Chondrosarcoma Foundation Think Tank\nTuesday\, November 11\, 8:30AM: 2:30PM \nBoca Raton\, Florida  \nAn interactive\, one-day meeting to unite clinicians\, researchers\, industry\, patients\, and advocates to address how we can collectively advance precision medicine and treatment for chondrosarcoma. The product of the think tank would be a meeting summary to support a strategic plan for the Chondrosarcoma Foundation to obtain and build resources that will advance the prevention of disease progression and advance effective care. \nPlease visit csfshayna.org/thinktank to register & view the itinerary and hotel information. \nThe Foundation is launching a virtual Chondrosarcoma Tumor Board\, a global panel of medical experts that will review complex cases and provide treatment recommendations. Focused on aggressive subtypes and underserved regions\, this board aims to improve care for patients worldwide and serve as a key educational resource for clinicians treating this rare cancer.
URL:https://rarediseases.org/event/chondrosarcoma-foundation-think-tank-2/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20251115
DTEND;VALUE=DATE:20251116
DTSTAMP:20250711T050514
CREATED:20250627T164102Z
LAST-MODIFIED:20250627T164231Z
UID:10000900-1763164800-1763251199@rarediseases.org
SUMMARY:National Pickleball Tournament Sarcoma Awareness Month November 15 in San Diego
DESCRIPTION:In honor of Sarcoma Awareness Month\, USA Pickleball is launching the “Dink Out Sarcoma” campaign\, inspired by pickleball champion and sarcoma survivor Jamie Elliott. Jamie\, diagnosed with dedifferentiated chondrosarcoma\, credits early detection with saving her life—and now she’s helping lead the charge for awareness nationwide. \nUSA Pickleball will feature Jamie’s story in their July 14 newsletter and social media\, with additional campaign content planned for national and regional tournaments\, including video boards and program ads. \nThe National Pickleball Tournament will be held November 15 in San Diego\, where the campaign will continue to grow visibility.\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n Watch Jamie’s inspiring story: YouTube Interview \nPatient advocacy groups across the country are mobilizing to support this initiative\, with a task force led by the Chondrosarcoma Foundation. Organizations and individuals are invited to join\, contribute content\, and help spread the message of early detection. \nInterested in getting involved? Contact Jeff Kramer at info@csfshayna.org. \n 
URL:https://rarediseases.org/event/national-pickleball-tournament-sarcoma-awareness-month-november-15-in-san-diego/
CATEGORIES:NORD Member Event
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