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 …
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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 …
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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 …
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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, …
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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 …
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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 …
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, …
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 …
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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 …
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 …
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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"
The SIAMG - Indo US Bridging RARE Summit 2026 brings together patients, researchers, clinicians, industry leaders, innovators, and advocates to strengthen collaboration and accelerate progress in rare disease research, diagnosis, therapies, and patient care. The Summit will serve as a platform for cross-border knowledge exchange and meaningful partnerships across the rare disease community. Date: December …
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