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, …
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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 …
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 …
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NORD's free virtual event for Spanish-speaking rare disease patients and families (October 3) Registration is now open for NORD’s first #LivingRare virtual event entirely in Spanish! https://bit.ly/4i6JPzG Join us Saturday, Oct. 3, from noon to 2:30 p.m. ET on Zoom for a free event bringing Spanish-speaking rare disease patients, families, and caregivers together for education …
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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 …
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Ya está abierta la inscripción para el primer evento virtual #LivingRare de NORD, completamente en español! 🎉 https://bit.ly/4i6JPzG Únase a nosotros el sábado 3 de octubre, del mediodía a las 2:30 pm ET en Zoom para un evento gratuito que reúne a pacientes de enfermedades raras de habla hispana, familias y cuidadores para educación y …
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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 …
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Click to enlarge image Join in a fun fall afternoon at Great American Beer Hall on October 3 from 3–6 PM! Come hang out, grab a drink, and help celebrate Bridget's TCS New York City Marathon journey while raising money for NORD. We’ll have a signature drink, raffles, food, beer, and plenty of good times. …
Join the International Pemphigus and Pemphigoid Foundation on Monday, October 5th at 11:00 AM - 12:15 PM EST/ Central European Time: 5:00 PM - 6:15 PM (17:00 - 18:15) for our next Scientific Seminar. In close cooperation with Drs. Ralf Ludwig & Katja Bieber of the Lübeck Institute for Experimental Dermatology at the University of …
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The Charcot-Marie-Tooth Association (CMTA) will host its 2026 Patient and Research Summit on October 9-10, 2026, at the Grand Bay Hotel San Francisco, 223 Twin Dolphin Dr., Redwood City, CA 94065. The two-day event brings together people living with Charcot-Marie-Tooth disease (CMT), caregivers, researchers, clinicians, and industry partners for education, research updates, and community connection. …
The Charcot-Marie-Tooth Association (CMTA) 2026 Patient & Research Summit brings together people living with Charcot-Marie-Tooth disease (CMT), caregivers, researchers, clinicians, and industry partners for two days of education and community. Whether you are newly diagnosed or have lived with CMT for years, the Summit offers practical information and opportunities to engage with the CMT community. …
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