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 …
Continue reading "2026 Wilson Disease Association Annual Conference"
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 …
Continue reading "Living Rare Living Stronger – Virtual Spanish Session October 3rd"
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"
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 …
Continue reading "Living Rare Living Stronger – Sesión virtual de español 3 de octubre"
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"
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 …
Continue reading "Scientific Seminar – International Pemphigus and Pemphigoid Foundation"
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. …
Continue reading "Charcot-Marie-Tooth Association (CMTA) 2026 Patient & Research Summit"
The Pulmonary Hypertension Wellness Expo is PHA's newest free, educational event for the PH community. The PH Wellness Expo is set for Saturday, Oct. 10, from 11 a.m. to 3 p.m. PDT in San Francisco. Attend the PH Wellness Expo to learn more about PH and it's associated conditions; access free PH-focused resources from local, …
Join the IPPF for their next IN PERSON Pacific Northwest Support Group Meeting on October 10th at the Seattle Public Library. Living with pemphigus or pemphigoid is hard enough, but when you feel alone it seems even harder. There's something special about connecting with people who really know what you're going through. You are not …
Continue reading "IPPF Pacific Northwest Support Group Meeting"
Please complete this form to access the requested resource.
