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 seems even harder. You are not alone! Register at: https://fundraise.pemphigus.org/group_sfl_july_2025

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 …

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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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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 that brings patients, families, and experts together to talk real-life solutions and share lived experiences in Philadelphia, PA July 25-27th. You’ll hear from cutting-edge researchers …

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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 feel alone it seems even harder. You are not alone.  Register here! https://fundraise.pemphigus.org/groups_nocal_July_2025 • 12:00pm - 3:00pm PST UC Davis Dermatology Conference Center, 3301 C …

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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 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, …

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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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