Event Date: May. 07 - 08, 2025 Event Time: Day One 8:30 a.m. - 6:30 p.m. ET, Day Two 8:00 a.m. ET - 2:30 p.m. ET Event Location: National Press Club About Join the National Health Council (NHC) for the 2025 Science of Patient Engagement Symposium on May 7–8. The Symposium will return to the …
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Autoimmune Pulmonary Alveolar Proteinosis (aPAP) is a rare lung disorder affecting approximately seven people per million. The disease affects individuals of all races, geographic regions, gender, and socioeconomic status. It has been diagnosed in individuals from 3 to 90 years of age. To share community perspectives on this rare disease, the National Organization for Rare …
Join @MissionMSA for the 2025 International MSA Congress, May 9–11 in Boston, MA or virtually! Connect with global experts, explore cutting-edge MSA research, and be part of the future of care. Learn More: https://missionmsa.org/internationalmsacongress/ #MSA2025 #MissionMSA Who Should Attend the International MSA Congress? Researchers & Clinicians At the 2025 International MSA Congress, researchers …
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🌞 Join Us for a Family Picnic with the Connecticut Rare Action Network! 🌳 Calling all rare disease patients, caregivers, families, and allies — you're invited to a FREE fun-filled picnic at Winding Trails in Farmington, CT! 📅 Saturday, May 10 🕐 1:00 PM – 4:00 PM 📍 Winding Trails, Farmington, CT Bring your beach …
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Empower yourself with knowledge & community! Join the Wholistic Healing Summit (May 12-16, 2025) for expert info & support on Lichen Sclerosus (LS). Hosted by LSSN. Register now! #LichenSclerosus #LSSN #VulvarHealth #PatientEmpowerment
In the coming months, Congress could vote on legislation that would strip Medicaid coverage and funding away from millions of rare disease patients. Please join us for a virtual training to learn more about the importance of the Medicaid program to rare disease patients and caregivers, tips on how to tell your story, and how …
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Don't miss the CureDuchenne FUTURES National Conference is an annual event focused on bringing education, connection, and hope to individuals and families affected by Duchenne muscular dystrophy. May 22-25, San Antonio, TX. Register at https://www.cureduchenne.org/futures
The Pathways to Care Expo is a community health fair designed to connect people impacted by rare diseases to community based resources and support services. This free event is hosted by NORD's Arkansas Rare Action Network! Date: Friday, May 30, 2025 Time: 1pm to 5pm Location: ACHE Research Center, 1000 Fianna Way, Fort Smith, AR …
Rare disease breakthroughs require collaboration. Join a community of researchers, clinicians, industry leaders, and others at the NORD® Rare Disease Scientific Symposium to share knowledge, exchange ideas, and forge partnerships that advance progress for patients across all rare diseases. The agenda will offer case study presentations, panel discussions, and extended audience Q&A on such topics …
Join NORD's Rare Action Network in South Portland, ME on Friday, June 6 from 9am to 1pm for advocacy training, policy education, and more! This event is free to attend and breakfast + lunch will be provided. Click here to register.
"The 2025 FPA Conference is a two-day in-person event connecting the worldwide facial pain community with experts who diagnose and treat people affected by facial pain. We are thrilled to host our first in-person event in six years! Thanks to your support, we’re able to offer tickets for $295 each; the same pricing seen at …
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Overview The Olivia's Light Pediatric Rare Disease Conference aims to improve patient care for children and families impacted by a rare disease. The conference will highlight different aspects of the rare disease journey, with an emphasis on rapid broad genetic testing, particularly whole exome and whole genome sequencing. The conference will also highlight other components …
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