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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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Rare Cancer Day is an annual celebration devoted to raising awareness about rare cancers and the challenges people living with them face. This year, Rare Cancer Day is being recognized on September 23. For the rare cancer community, timely access to innovative diagnostic and comprehensive care can mean the difference between life and death. During … Continue reading "Webinar: Recognizing Rare Cancer Day Through Action" |
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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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ED for EDS4 presents its 1st Annual Poker Run on Sunday, September 13 in Charlton, MA. Click here to enlarge the image. |
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Join NORD’s Rare Cancer Coalition on Thursday, September 17 at 12 p.m. ET for a webinar focused on exploring how patient perspectives can help strengthen and improve rare cancer research ahead of Rare Cancer Day. Experts and patients will discuss the opportunities and challenges rare cancer patients face when participating in research and share why integrating patient perspectives … |
2 events,Register today for the 2026 MSD Virtual Summit! This FREE, two-day, online gathering will bring together researchers, clinicians, families, advocates, and partners from around the world. Through shared knowledge, lived experience, and innovative efforts, we move closer to better care and future therapies for Multiple Sulfatase Deficiency. In the coming weeks, we will update this page … |
6 events,On September 19, the 2026 Face Forward Patient Support Summit will bring together patients, caregivers, clinicians and advocates for an inspiring day of connection, education, and empowerment. This event will feature: Expert medical presentations on the latest RHS research and treatment advances Interactive workshops and wellness sessions for patients and caregivers Networking and advocacy opportunities … Continue reading "Ramsay Hunt Syndrome Foundation Face Forward 2026 Patient Support Summit" 7th Annual Free All-Community Virtual MSA Conference - September 19-20, 2026 MSA Hub / Conference Registration MSA-Hub.circle.so Exciting lectures with both clinicians & researchers about MSA diagnosis, orthostatic hypotension, alpha-synuclein, biomarkers, disease mechanisms, and new treatments and clinical trials. There are also Ask the Doctor and Ask the Scientist Q&As, plus a Caregivers Breakout. Expert … Continue reading "7th Annual Free All-Community Virtual MSA Conference – September 19-20, 2026"
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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" 
Join this fun New England Patriots-themed fundraiser hosted by Julia Maderia in East Bridgewater, MA. Support Julia's fundraising efforts for NORD Running for Rare. Click here to read more and RSVP. Click here to enlarge the image. |
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Join Mission MSA for our Path to a Cure in Philadelphia! On Sunday, September 20 at 9:00am ET, the MSA community will come together at Penn Park in partnership with the University of Pennsylvania, a designated MSA Center of Excellence, to honor and uplift those living with multiple system atrophy. This gathering fosters unity, encouragement, … Continue reading "Join Mission MSA for our Path to a Cure in Philadelphia!" |
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3 events,Rare Cancer Day, September 23 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 the NORD Rare Cancer Coalition®, which is composed of 30+ rare cancer-specific member organizations, Rare Cancer Day is observed on September 23 to highlight the challenges patients face … Join the National Ataxia Foundation and Friedreich's Ataxia Research Alliance in advocating for Ataxia and rare disease related policy issues during their annual United Against Ataxia Hill Day on September 23, 2026! Advocates will have the opportunity to attend virtual meetings with members of Congress and their staffers to tell their stories and relay the … |
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In this session, NORD staff will provide an overview of NORD's volunteer programming. 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 space for you to ask questions and determine the next steps for … |
2 events,Registration is now open for the 2026 WDA Annual Conference, taking place September 25–26 in Chicago. Co-hosted by Northwestern University Feinberg School of Medicine’s Wilson Disease Center of Excellence and the Wilson Disease Association, the conference will bring together healthcare professionals, researchers, advocates, industry partners, patients, and caregivers from across the Wilson disease community. The … Continue reading "2026 Wilson Disease Association Annual Conference" |
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Join community members for an evening of celebration and purpose at our Oktoberfest-themed happy hour! Enjoy authentic German beer, delicious food, live music, and exciting raffle prizes - all while supporting a powerful cause. Last year's inaugural event raised over $50,000 for the National Organization for Rare Disorders (NORD). The Benassi family, alongside business partners … Continue reading "2nd Annual Oktoberfest – Raise a Stein for a Cause" |
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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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