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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" |
3 events,
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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Join the International Pemphigus and Pemphigoid Foundation (IPPF) for the next Scientific Seminar on Monday, November 2nd 11:00 AM - 12:15 PM EST/ 5:00 PM - 6:15 PM (17:00 - 18:15) Central European Time. In close cooperation with Drs. Ralf Ludwig & Katja Bieber of the Lübeck Institute for Experimental Dermatology at the University of … Continue reading "International Pemphigus and Pemphigoid Foundation (IPPF) Scientific Seminar" |
2 events,TANGO2 Research Foundation T2RF Grant Cycle 7 is OPEN! Now accepting Letters of Intent (LOIs) The TANGO2 Research Foundation (T2RF) is now accepting LOIs for 2027 Research Grants, supporting innovative seed and pilot research that advances our understanding of TANGO2 Deficiency Disorder (TDD). These grants are designed to help researchers test promising ideas, establish feasibility, … Continue reading "Submission Deadline! TANGO2 Research Foundation Grant Cycle" |
4 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"
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The Wilson Disease Association cordially invites physicians attending The Liver Meeting® 2026 to join us for a complimentary Affiliate Event lunch: “Detecting Wilson Disease Early.” Enjoy lunch and networking with fellow physicians and patient advocates in a welcoming setting, with discussion touching on newborn and genetic screening, how Wilson disease presents differently across the lifespan, … |
2 events,
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Join Mission MSA for their final Path to a Cure event of 2026! On Sunday, November 8 at 9:00am PT, the MSA community will come together in San Diego, California to honor and uplift those living with multiple system atrophy. This event fosters unity, encouragement, and meaningful community while raising funds that support everything Mission … |
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3 events,
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As the National Organization for Rare Disorders (NORD) looks to 2027, we invite residents of Wisconsin to join us for virtual community conversation to help shape rare disease public policy in their state! Register Learn from NORD’s State Policy team about policy matters related to Rare Disease Advisory Councils, access to medical foods and formulas, … Continue reading "Wisconsin Rare Action Coalition Information Meeting"
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As the National Organization for Rare Disorders (NORD) looks to 2027, we invite residents of Montana to join us for a virtual community conversation to help shape rare disease public policy in their state! Register Learn from NORD’s State Policy team about policy matters related to access to medical foods and formulas, step therapy, and … Continue reading "Montana Rare Action Coalition Information Meeting" |
2 events,
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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, … |
2 events,
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Join the IPPF for their next virtual Florida Patient Support Group on November 15th at 2pm EST. 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 alone. Register online: https://fundraise.pemphigus.org/group_sfl_november_2026 |
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2 events,POLG EL-PFDD Meeting MitoAction and The POLG Foundation are proud to announce that they will co-host an Externally-Led Patient-Focused Drug Development (EL-PFDD) meeting focused on POLG-Related Disorders. The virtual meeting will be held on Tuesday, November 17, 2026, and is open to all members of the mitochondrial disease community, including patients, caregivers, clinicians, researchers, and … Continue reading "MitoAction and The POLG Foundation POLG-Related Disorders. EL-PFDD Meeting" |
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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