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1 event,2026 Global Patient Unmet Needs Assessment is open! @MPNResearch Foundation invites individuals living with a myeloproliferative neoplasm (MPN) to participate in the 2026 Global Patient Unmet Needs Assessment. Your insights help guide future research, improve resources, and highlights where unmet needs remain for those living with MPNs worldwide. Topics include: • MPN diagnosis & monitoring • Therapies … Continue reading "MPN Research Foundation Global Patient Unmet Needs Assessment" |
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Pericarditis Alliance offers a once a month virtual support group for patients and their families to check in, connect and learn from each other. They invite speakers to talk about topics such as adopting an anti-inflammatory diet and functional medicine. At the end of each meeting, they invite participants to join in a short … Continue reading "Pericarditis Alliance Virtual Support Group Every 1st Saturday" |
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Are you a collegiate student interested in starting a NORD Students for Rare chapter on campus? Come and learn more about the program and next steps during our New Chapter Info Session! Our July session will take place on July 7 at 6:00 p.m. ET. We look forward to seeing you there! Register Here |
2 events,About the Conference More about the event here: https://nnpdf.org/conf/ Each year, the NNPDF community gathers for something truly special, a chance to reconnect, welcome new families, and share the journey with people who genuinely understand life with Niemann-Pick disease. Our annual conference is filled with meaningful conversations, lasting friendships, and the kind of support that … Continue reading "NNPDF Family Support and Medical Conference" |
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2 events,You’re invited to attend National PKU Alliance’s “Living Our Best PKU Life” Community Conference, taking place Thursday, July 16, through Sunday, July 19, 2026, in Lombard, Illinois, a suburb of Chicago. This family-friendly event, held at the Westin Chicago Lombard, is NPKUA’s largest PKU gathering in the country and invites anyone touched by PKU, including … Continue reading "National PKU Alliance’s “Living Our Best PKU Life” Community Conference" |
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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 … Continue reading "🌟 Raymond A. Wood Foundation Survivor Support Group – Monthly Virtual Meetings" |
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The TBCK Foundation is excited to host “Black Ties for Rare”, a family-friendly gala to honor and celebrate those affected by rare diseases. They warmly invite you to join on Sunday, July 19, from 5-10 PM at the Hyatt Regency Aurora, CO for an evening of connection, storytelling, and community. "Get ready for an unforgettable evening … Continue reading "The TBCK Foundation “Black Ties for Rare”" |
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As state legislative sessions wind down, join NORD’s Rare Action Network (RAN) for an end of session policy & advocacy wrap up. During this webinar, we’ll discuss bills we tracked across the country, celebrate our hard-fought advocacy wins, and identify key opportunities for growth and improvement. We’ll also discuss potential areas of focus as we … |
2 events,The Hydrocephalus Association will host HA CONNECT, its 19th Annual National Conference on Hydrocephalus, in Indianapolis from July 23–25, 2026. Families, clinicians, researchers, and industry leaders will gather to connect, learn, and explore the latest advancements in hydrocephalus treatment, management, and everyday living. hydrocephalusconference.org |
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Can’t make it to an in-person event? The National Organization for Rare Disorders (NORD®) is bringing the community straight to your screen! Registration is now officially open for the FREE Living Rare, Living Stronger® Summer Webinar Series, designed specifically for patients, families, and caregivers. Join us for candid conversations, essential education, and community-building. Here is … Continue reading "Living Rare, Living Stronger® Summer Webinar Series" 
In this session, our Community Engagement team will provide a comprehensive, high-level overview of NORD's volunteer programming and the strategic initiatives. This is designed to give you a clear understanding of our mission and the various ways you can make an impact. We will conclude with an open-floor discussion, providing a dedicated space for you … |
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*Win a 2026/ 2027 Membership to Salmon Falls Country Club Hollis, ME $100 minimum donation per chance 125 chances to win Donate June 11- July 9th Winner selected LIVE July 9th 8:00pm River Tap & Grill 52 Golf Course Lane, Hollis, ME Thank you, Salmon Falls Country Club/ River Tap & Grill for your generous … Continue reading "Support Calley Forbes Fundraising for NORD Running for Rare!"
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Pericarditis Alliance offers a once a month virtual support group for patients and their families to check in, connect and learn from each other. They invite speakers to talk about topics such as adopting an anti-inflammatory diet and functional medicine. At the end of each meeting, they invite participants to join in a short … Continue reading "Pericarditis Alliance Virtual Support Group Every 1st Saturday" |
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