Connect Virtually with Other Pemphigus and Pemphigoid Patients and Caregivers in South Florida on July 13th. Living with pemphigus or pemphigoid is hard enough, but when you feel alone it …
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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 …
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 …
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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 …
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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 …
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 …
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Survivor Support Group – Monthly Virtual Meetings Dates: Third Saturday of each monthTime: 3:00 PM ETLocation: Online via ZoomRegistration: Register here The Raymond A. Wood Foundation's Survivor Support Group offers …
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We’re More Than Our Platelet Counts—Let’s Talk Immune Thrombocytopenia Together! Join a community that speaks your language. The Platelet Disorder Support Association (PDSA) is hosting its 25th Annual ITP Conference …
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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 …
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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 …
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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 …
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🌟 2025 LFSA Youth & Young Adult Workshop Dates: August 15–17, 2025Location: Boston, MAEligibility: Ages 13–25 with Li-Fraumeni Syndrome (LFS)Registration: Interest Form The LFSA Youth & Young Adult Workshop is …
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 …
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