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LCC Foundation Roll n Stroll Missouri Apr; 26th

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, …

International Pemphigus and Pemphigoid Foundation May 1st Patient Education Webinar on “Biopsies Save Lives: Pemphigus, Pemphigoid, and Oral Care”

Virtual Event Virtual Event

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 …

Adrenal Insufficiency United LA Lunch and Learn

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. …

National Health Council (NHC) 2025 Science of Patient Engagement Symposium

washington dc

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 …

Externally-Led Patient Focused Drug Development Meeting on Autoimmune Pulmonary Alveolar Proteinosis (EL-PFDD aPAP Virtual Meeting)

Virtual Event Virtual Event

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 …

2025 International MSA Congress, May 9–11 in Boston, MA

  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 …

Family Picnic with the Connecticut Rare Action Network! 🌳

🌞 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 …

LSSN Wholistic Healing Summit (May 12-16, 2025)

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  

NORD Grassroots Advocacy Training: Protect Medicaid

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 …

CureDuchenne FUTURES National Conference

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

Rare Mother’s Day Brunch in San Jose, CA

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!

Pathways to Care Expo in Forth Smith, AR

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 …