Did you register to run on your own and want to join #Running4Rare? There's always room for more awesome people on the team! Email our NORD staff partner Jaime Pacheco [email protected] and she'll share more details about apparel. 6:40-7 a.m. Arrive at Boston Common- Boylston Street and Team meets right outside of the start corral. …
How to Support the #Running4Rare Support the NORD #Running4Rare team by making a donation to the team or individual runner here. Join us at the cheer section! Monday, April 21, 2025 Cheer Section – Join the best and be the loudest with us! ❤️ Location: Wellesley, MA – Mile 14.6 Cheer Section for the 2025 …
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Monday, April 21, 2025 Cheer Section - Join the best and be the loudest with us!❤️ Wellesley, MA Mile 14.6 Cheer Section for the 2025 Boston Marathon Team 10 a.m.-3 p.m. (until the last runner on our team passes) Sign up here Location: Unitarian Universalist Society of Wellesley Hills 309 Washington Street in Wellesley, MA …
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Join NORD on Tuesday, April 22 from 9am to 4:30pm to advocate for legislation (HB 2457) that will establish a Rare Disease Advisory Council (RDAC). This is your chance to meet with legislators in-person in Salem and let them know an RDAC is needed in Oregon! Location: State Library of Oregon, 250 Winter St. NE, …
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
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.
