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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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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" 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"
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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. … |
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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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" |
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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" |
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" |
2 events,Rare Cancer Coalition Reception, October 18 NORD Breakthrough Summit Grand Hyatt, Washington, D.C. The National Organization for Rare Disorders (NORD) Rare Cancer Coalition is hosting a special networking reception at the NORD Rare Diseases & Orphan Products Breakthrough Summit on Sunday, October 18. The reception will be held at the conference hotel and offers dedicated networking opportunities for patient organizations, academic research institutions, clinicians, regulators, and industry partners working … Continue reading "Rare Cancer Coalition Reception, October 18 " |
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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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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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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 … |
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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