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. This unique event brings together families, clinicians, and researchers to accelerate breakthroughs and build community. Conference Highlights Science Day (July 11): …
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 …
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 …
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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 …
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, …
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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 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 …
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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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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 …
