NORD Member Event

Join the IPPF @healourskin on June 23rd for a Patient Education Webinar on Corticosteroids for Pemphigus and Pemphigoid and How to Manage Side Effects with Dr. Rachel Lipman, MD, Dermatologist and Internist at Northwestern Memorial Hospital in Chicago, Illinois. For more information and to register online, visit: https://zoom.us/webinar/register/WN_ixSN-AsSTJO-ZLh78g_P_Q

Connect Virtually with Other Pemphigus and Pemphigoid Patients and Caregivers in the Southern California area on June 24th. Living with pemphigus or pemphigoid is hard enough, but when you feel alone it seems even harder. You are not alone.

United for Progress: A New Chapter in Sarcoidosis Join the FSR Global Virtual Summit | June 28–29 Learn the latest care Build global connections Get tools to thrive https://loom.ly/aLYtjh0 #FSR2025 #SarcoidosisSummit #StopSarcoidosis   Each person’s sarcoidosis story is unique. The FSR’s Virtual Global Sarcoidosis Summit is a virtual global arena offering a library of resources, …

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rideATAXIA Hometown offers teammates the opportunity to ride individually or host local events for their community as part of the rideATAXIA Program Series. rideATAXIA Hometown Boston is proud to be one of the 2024 events! We invite you to join our local Boston committee for a family-friendly ride along the original battlefields where the Revolutionary …

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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 …

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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.   Conference information, including …

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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 …

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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 The 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 …

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🔬 DTRF International Research Workshop Date: 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.🔗 …

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