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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" |
3 events,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"
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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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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"
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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" Pericarditis Alliance is so pleased to offer three new monthly virtual support groups for patients and their families to check in, connect, and learn from each other. Registration is open for one month at a time and will be open for each group by the Friday after the previous meeting. Register for each group through … Continue reading "Pericarditis Alliance – Shares From the Collective hosted by Lisa" |
2 events,Pericarditis Alliance is so pleased to offer three new monthly virtual support groups for patients and their families to check in, connect, and learn from each other. Registration is open for one month at a time and will be open for each group by the Friday after the previous meeting. Register for each group through … Continue reading "Pericarditis Alliance Support Groups – Pericarditis Under 30 hosted by Alexa" |
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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" |
3 events,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" |
5 events,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, …
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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" |
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2 events,Join Cure HHT in Cape Cod, October 12-16, 2026, as breakthroughs set sail at the 16th HHT International Scientific Conference. Together, we'll explore the latest advances in HHT research, diagnosis, and care -- connecting scientists, clinicians, and innovators from across the globe. Engage in bold discussions, share discoveries, and help shape the next era of … Continue reading "Cure HHT International Scientific Conference" |
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Join the IPPF for their next Tri-State New York Virtual Support Group on Wednesday October 14, 2026 • 6:30 pm - 8:30 pm (EST). Living with pemphigus or pemphigoid is hard enough, but when you feel alone it seems even harder. You are not alone. Visit https://fundraise.pemphigus.org/groups_tristate_ny_october_2026 for more information and to register. |
4 events,"Siegel Rare Neuroimmune Association A three-day hybrid (in-person and online) educational event for those with acute disseminated encephalomyelitis (ADEM), acute flaccid myelitis (AFM), MOG antibody disease (MOGAD), neuromyelitis optica spectrum disorder (NMOSD), optic neuritis (ON), and transverse myelitis (TM), as well as their families, care partners, and medical professionals. About The RNDS was created to … Continue reading "2026RNDS October 15 – 17 2026, Hybrid Conference" The Sickle Cell Disease Association of America Inc., a national nonprofit organization that advocates for people affected by sickle cell disease, will hold its 54th annual national convention Thursday, Oct. 15, through Saturday, Oct. 17, at the Embassy Suites by Hilton in Concord, North Carolina. You are invited to join the Sickle Cell Disease Association … Continue reading "Sickle Cell Disease Association of America at the 54th Annual National Convention" |
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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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Rare Disease Advisory Councils (RDACs) give people impacted by rare diseases a meaningful voice in state government, and an opportunity to help shape policies and programs impacting the rare disease community. During this webinar, we’ll teach you how RDACs operate, and the different ways that advocates can advance and strengthen the work of a council. … Continue reading "Webinar: Make an Impact with Your State’s Rare Disease Advisory Council" |
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Featured
The 2026 NORD Rare Diseases + Orphan Products Breakthrough Summit will welcome more than 900 key stakeholders in the rare disease community to Washington, D.C. on October 25-27, 2026. This event brings together thought leaders in industry, academia, patient advocacy, and government for the latest updates on rare disease diagnosis, drug development, research, patient engagement, public policy … Continue reading "2026 NORD Rare Diseases & Orphan Products Breakthrough Summit" |
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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 …
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10th Annual Food Fight for Scleroderma Date: Thursday, October 29, 2026 Time: 6:00–9:00 p.m. | First Bite VIP begins at 5:30 p.m. Location: Mile High Station, 2027 W. Colfax Ave., Denver, CO 80204 Join the National Scleroderma Foundation Rocky Mountain Chapter for the 10th Annual Food Fight for Scleroderma, Denver’s signature culinary event supporting people … |
4 events,The Abbey Meyers Khushi Bridging Rare Awards & Gala 2026, hosted by IndoUSrare, is a fundraising gala dedicated to supporting our mission and creating greater opportunities for the rare disease community. Every person who joins, helps strengthen our community and supports the mission of IndoUSrare. Highlights of the evening: Abbey Meyers Khushi Bridging Rare Awards … Continue reading "Abbey Meyers Khushi Bridging Rare Awards & Gala 2026" 
Make a difference and join NORD’s Running for Rare Cheer Squad at the 2026 TCS New York City Marathon! Join NORD’s Running for Rare Cheer Squad and help bring energy, encouragement, and support to runners along the course. Your presence will help motivate NORD’s team and show the rare disease community that they are surrounded … Continue reading "Join NORD’s Running for Rare Cheer Squad for the 2026 TCS NYC Marathon" Pericarditis Alliance is so pleased to offer three new monthly virtual support groups for patients and their families to check in, connect, and learn from each other. Registration is open for one month at a time and will be open for each group by the Friday after the previous meeting. Register for each group through … Continue reading "Pericarditis Alliance Support Groups – Pericarditis Under 30 hosted by Alexa" |
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