The Roll n' Stroll is a family-friendly event to raise awareness and funds for The LCC Foundation who support leukoencephalopathy with brain calcifications and cysts (LCC) patients and their families. April 26, 2025. Location: Duello Elementary Missouri or Virtual. Walk, roll, and rally for those living with LCC/Labrune Syndrome. Together, we’re moving toward hope, …
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Join the IPPF on May 1st for a Patient Education Webinar on "Biopsies Save Lives: Pemphigus, Pemphigoid, and Oral Care" with Dr. Mark Mintline, Associate Professor at Western University. Register at https://zoom.us/webinar/register/WN_E-f0PnP2QtO2W5RlyAB9tQ International Pemphigus and Pemphigoid Foundation Biopsies Save Lives: Pemphigus, Pemphigoid, and Oral Care Date & Time May 1, 2025 01:00 PM in Eastern Time (US …
May 3, 2025 AIU with host a full day of programming for those with adrenal insufficiency and their caregivers in Los Angeles, CA!! Hear from some of the leading experts in adrenal insufficiency on treatment and living with this complicated condition. Emergency injection training! Los Angeles, California May 3, 2025 from 9:00 a.m. to 4:00 p.m. …
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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
NORD's California Rare Action Network (RAN) invites mothers and caregivers to children living with rare diseases for our 2nd Annual Rare Mother's Day Brunch being held in San Jose on Saturday, May 24, 2025. Location: Mexican Heritage Plaza, 1700 Alum Rock Ave, San Jose, CA 95116 Time: 10am to 1pm Click here to sign up!
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 …
One in 10 Americans lives with rare disease, many of whom fight a daily battle to access the care and support they need. Your gift to the National Organization for Rare Disorders (NORD®) funds life-changing programs and helps us advance policies and research to ensure that everyone gets the care they need AND deserve.
