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2 events,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" 
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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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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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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Cystinosis Research Network (CRN) Scientific Symposium: Advancing the Future of Cystinosis Care Date: November 13, 2026 8:00am - 6:00pm ET One day, in-person event Weber's Hotel 3050 Jackson Ave, Ann Arbor, MI 48103 Registration and details at https://cystinosis.org/event/2026symposium/ Questions? Email [email protected] The CRN Scientific Symposium is a one-day, peer-to-peer meeting bringing together physicians, clinicians, researchers, … |
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2 events,SMRM 2026 — 12th Annual Conference of the Society for Mitochondrial Research and Medicine Description: SMRM 2026 brings together clinicians, researchers, patient advocates, and rare disease experts to advance conversations around mitochondrial science, medicine, research, and patient care. In collaboration with IndoUSrare, the conference will provide a platform for knowledge sharing, scientific exchange, and collaboration … |
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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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3 events,
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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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