Join the Superficial Siderosis Research Alliance (SSRA) for our first three-day symposium dedicated to patients, caregivers, clinicians, and researchers focused on advancing care, treatment, and research for superficial siderosis. June …
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The purpose of the RCC Policy Priorities Working Group is to monitor emerging federal and state policies that impact the rare cancer community. Members will work to equip advocates and …
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Join NORD for a virtual Community Conversation on The Living Rare Study, the first-ever large-scale study in the US to track the evolving experience of thousands of individuals and caregivers …
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Cutaneous Lymphoma Foundation – Upcoming Patient Education Event This free Patients Seminar is offered to help patients, care partners and others affected by cutaneous lymphoma receive accurate information about cutaneous …
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FACES Camp - a camp for kids with facial differences! FACES Camp is a traditional overnight summer camp that brings together youth from throughout the United States with craniofacial differences …
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Calling all PKU researchers! The National PKU Alliance annual grant research program is now open. Visit https://npkua.grantplatform.com/ to view the request for proposals and to apply. The deadline is Monday, …
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🎙️ MPN Pathways: Communicating with Researchers & Understanding Clinical Trials Date: Thursday, June 17, 2025Time: 5:00–6:00 PM CTFormat: Live Zoom WebinarRegister here: Sign Up Now Join the next session of …
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Each year, UMDF’s Mitochondrial Medicine Conference brings together the best minds in mitochondrial medicine and the patients we serve. With over 700 attendees representing almost every state in the U.S. …
The Pheo Para Alliance's next education webinar, Pediatrics Webinar, is happening on Thursday, June 19th, at 8:30am PST/11:30am ET. Dr. Ruth Casey and Dr. Christina Pamporaki will offer valuable …
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Dates: June 20–22, 2025Location: Holiday Inn Orlando – Disney Springs, FLRegistration: Register here Join us for the Gorlin Syndrome Alliance’s 2025 National Conference, a pivotal event for individuals and families …
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The Gorlin Syndrome Alliance Patient Conference only happens every two years, and they are excited to reunite with the community June 20-22 in Orlando! People who live with a rare, …
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The Sisters' Hope Foundation externally-led patient focused drug development (EL-PFDD) session will be held on Friday June 20th, 2025. Information and insights gained during this meeting will be summarized in …
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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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🩺 2025 SNMMI Patient Education Day PheoPara Alliance Date: Sunday, June 22, 2025Location: New Orleans Convention Center, New Orleans, LAFormat: Hybrid (In-person & Virtual)Registration: Register here Join the Society of …
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 …
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 …
NORD® Living Rare, Living Stronger® in Georgia is a one-day event to educate and support patients, caregivers, and their families with the focus in reducing or eliminating their burdens and …
2025 Cholangiocarcinoma Portland Symposium The 2025 Portland Cholangiocarcinoma Symposium will convene in Portland and draw together leading experts, researchers, healthcare professionals, patients, and advocates. This event promises to be a …
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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 …
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Register for the 2025 Foundation for Sarcoidosis Research (FSR) Virtual Global Sarcoidosis Summit – June 28–29! This free two-day online event will feature 20+ expert-led sessions, 30+ educational booths, and …
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 …
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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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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 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 …
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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 …
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 …
In-person in Toronto, Canada, with virtual attendance options Join 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 …
41ST ANNUAL MEETING OF THE HISTIOCYTE SOCIETY The 41st Annual Meeting of the Histiocyte Society will take place September 28-30, 2025 in Seattle, WA USA and online with Board and …
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Rare Cancer Day: September 30 Rare 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 …
Annual Rare Cancer Coalition Reception: October 19 The National Organization for Rare Disorders (NORD) Rare Cancer Coalition is hosting a special networking reception at the NORD Rare Diseases & Orphan …
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Chondrosarcoma Foundation Think Tank Tuesday, November 11, 8:30AM: 2:30PM Boca Raton, Florida An interactive, one-day meeting to unite clinicians, researchers, industry, patients, and advocates to address how we can collectively …
