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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The Pathways to Care Expo is a community health fair designed to connect people impacted by rare diseases to community based resources and support services. This free event is hosted by NORD's Arkansas Rare Action Network! Date: Friday, May 30, 2025 Time: 1pm to 5pm Location: ACHE Research Center, 1000 Fianna Way, Fort Smith, AR …
Please join XLID98 Foundation on May 31, 2025 for their first conference for the XLID98 community. This virtual conference is meant as an opportunity for you to hear from medical professionals, therapists, and other parents on the research, challenges, and successes surrounding this genetic condition. Join virtually from 8:30 am Eastern Time until 4:30 pm …
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Rare disease breakthroughs require collaboration. Join a community of researchers, clinicians, industry leaders, and others at the NORD® Rare Disease Scientific Symposium to share knowledge, exchange ideas, and forge partnerships that advance progress for patients across all rare diseases. The agenda will offer case study presentations, panel discussions, and extended audience Q&A on such topics …
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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🧪 MPN Pathways: Empowered Voices in Research – FDA 101 Webinar Date: Thursday, June 5, 2025Time: 5:00–6:00 PM CTFormat: Live via ZoomRegistration: Sign up herempnadvocacy.com+4Reddit+4The Patient Story+4 Join us for the next session in the MPN Pathways: Empowered Voices in Research series, focusing on the U.S. Food and Drug Administration (FDA). This webinar will provide …
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Join NORD's Rare Action Network in South Portland, ME on Friday, June 6 from 9am to 1pm for advocacy training, policy education, and more! This event is free to attend and breakfast + lunch will be provided. Click here to register.
"The 2025 FPA Conference is a two-day in-person event connecting the worldwide facial pain community with experts who diagnose and treat people affected by facial pain. We are thrilled to host our first in-person event in six years! Thanks to your support, we’re able to offer tickets for $295 each; the same pricing seen at …
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Overview The Olivia's Light Pediatric Rare Disease Conference aims to improve patient care for children and families impacted by a rare disease. The conference will highlight different aspects of the rare disease journey, with an emphasis on rapid broad genetic testing, particularly whole exome and whole genome sequencing. The conference will also highlight other components …
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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 11-13, 2025 | Loeb House| Harvard University | Cambridge, MA
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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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 impacted by rare diseases! Attendees will receive step-by-step education on how to participate in the study. NORD staff will demonstrate how to create an IAMRARE …
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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
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 to experience a week at camp with other children who have similar medical conditions. Located in Cloudland, GA, on Lookout Mountain, the camp is for …
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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, June 16th, 2025 EST. Email any questions to grants@npkua.
🎙️ 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 the MPN Pathways: Empowered Voices in Research series, focused on helping MPN patients and caregivers better understand clinical trials and how to communicate effectively with …
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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. and more than 15 different countries, the Conference is recognized as the world’s preeminent event for mitochondrial disease. Four Day Focus on Mitochondrial Medicine for …
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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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 the "Voice of the Patient" report that will be published for public use. Register to participate in person or virtually through Zoom. Please contact Erin …
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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, …
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 alone it seems even harder. You are not alone.
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 challenges. LRLS will strive to address the need for candid dialogue around difficult topics, tools for self-advocacy, and connection to much-needed resources.
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 crucial platform for sharing the latest advancements and addressing the challenges in cholangiocarcinoma research and treatment. When: Friday, June 27, 2025 Time: 9:00am – 3:00pm …
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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 #SarcoidosisSummit #StopSarcoidosis Each person’s sarcoidosis story is unique. The FSR’s Virtual Global Sarcoidosis Summit is a virtual global arena offering a library of resources, …
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