Rare Cancer Coalition at ASCO! May 30 – June 3 The Rare Cancer Coalition will have a booth in the Patient Advocacy Pavilion at the American Society of Clinical Oncology Annual Meeting, where we’ll be engaging with patients, caregivers, and oncology professionals to share resources and highlight the rare community. Visit us to learn how …
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Join IWMF to celebrate their 30th Annual Ed Forum for #WM patients and caregivers May 30-June 1. The IWMF Educational Forum is a pivotal gathering designed to educate and empower individuals affected by Waldenstrom's macroglobulinemia (WM). This forum brings together patients, caregivers, healthcare professionals, and researchers for a comprehensive exploration of WM-related topics. Attendees can …
🩺 2025 IWMF Educational Forum: Advancing Waldenström’s Macroglobulinemia Care Dates: May 30 – June 1, 2025Location: Sawgrass Marriott Golf Resort & Spa, Ponte Vedra Beach, FLRegistration: Register here Join the International Waldenström’s Macroglobulinemia Foundation (IWMF) for their premier educational event, bringing together patients, caregivers, clinicians, and researchers. Engage in sessions covering the latest research, treatment …
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SDS PFDD Meeting EL-PFDD Meeting for Shwachman-Diamond Syndrome June 4 This meeting is an Externally-led Patient-Focused Drug Development meeting, which is a special type of meeting developed by the FDA to give FDA and other key stakeholders, including medical product developers (pharma/biotech companies), health care providers (doctors), researchers, and the general public, a unique and …
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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 policy-makers with the resources, data, and patient-informed recommendations they need to make informed, equitable, decisions. This meeting is open to Rare Cancer Coalition members and …
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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 lymphoma and connect with other people who share similar experiences. More information here! https://www.clfoundation.org/pscl-dublin Saturday, 14 June 2025 9:30am - 13:00pm
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 affected by Gorlin syndrome. This year’s theme, “Our Story, Our Science,” emphasizes the integral role of patient experiences in shaping research and care.Facebook+5Gorlin Syndrome Alliance+5Gorlin …
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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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🩺 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 Nuclear Medicine and Molecular Imaging (SNMMI) for a comprehensive day of learning and connection. This free event offers patients and caregivers insights into nuclear medicine, …
