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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 …

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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 …

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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 …

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RCC Medical Education Working Group Meeting: June 18, 1:00 PM

RCC Medical Education Working Group Meeting: June 18, 1:00 PM The purpose of the RCC Medical Education Working Group is to develop and support initiatives that educate a broad range of audiences about rare cancers - including patients, caregivers, healthcare providers, and industry stakeholders. Members will work to improve understanding, communication, and informed decision making …

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CDMRP Funding for Rare Cancer Research — 2025 Program Updates & Opportunities: May 21, 2:00 PM

Tagged in: Rare Cancer Coalition

CDMRP Funding for Rare Cancer Research — 2025 Program Updates & Opportunities: May 21, 2:00 PM The NORD Rare Cancer Coalition will come together for our annual webinar on how to access $17.5 million in rare cancer research funding available through the U.S. Department of Defense (DoD) Congressionally Directed Medical Research Program (CDMRP). In addition …

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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

IWMF Educational Forum: May 30 – June 1

Tagged in: Rare Cancer Coalition

Join IWMF to celebrate their 30th Annual Ed Forum for #WM patients and caregivers May 30-June 1. The IWMF Educational Forum is a pivotal gathering designed to educate and empower individuals affected by Waldenstrom's macroglobulinemia (WM). This forum brings together patients, caregivers, healthcare professionals, and researchers for a comprehensive exploration of WM-related topics. Attendees can …

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🩺 2025 IWMF Educational Forum: Advancing Waldenström’s Macroglobulinemia Care

Tagged in: Rare Cancer Coalition

🩺 2025 IWMF Educational Forum: Advancing Waldenström’s Macroglobulinemia Care Dates: May 30 – June 1, 2025Location: Sawgrass Marriott Golf Resort & Spa, Ponte Vedra Beach, FLRegistration: Register here Join the International Waldenström’s Macroglobulinemia Foundation (IWMF) for their premier educational event, bringing together patients, caregivers, clinicians, and researchers. Engage in sessions covering the latest research, treatment …

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Rare Cancer Coalition at ASCO! May 30 – June 3

Tagged in: Rare Cancer Coalition

Rare Cancer Coalition at ASCO! May 30 – June 3 The Rare Cancer Coalition will have a booth in the Patient Advocacy Pavilion at the American Society of Clinical Oncology Annual Meeting, where we’ll be engaging with patients, caregivers, and oncology professionals to share resources and highlight the rare community. Visit us to learn how …

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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 …

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XLID98 Foundation Virtual Conference: May 31st

Virtual Event Virtual Event

Please join XLID98 Foundation on May 31, 2025 for their first conference for the XLID98 community. This virtual conference is meant as an opportunity for you to hear from medical professionals, therapists, and other parents on the research, challenges, and successes surrounding this genetic condition. Join virtually from 8:30 am Eastern Time until 4:30 pm …

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NORD Rare Disease Scientific Symposium

Grand Hyatt, Washington, DC 1000 H St NW, Washington, DC, United States

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 …

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SDS PFDD Meeting EL-PFDD Meeting for Shwachman-Diamond Syndrome: June 4th

Tagged in: Rare Cancer Coalition

SDS PFDD Meeting EL-PFDD Meeting for Shwachman-Diamond Syndrome June 4 This meeting is an Externally-led Patient-Focused Drug Development meeting, which is a special type of meeting developed by the FDA to give FDA and other key stakeholders, including medical product developers (pharma/biotech companies), health care providers (doctors), researchers, and the general public, a unique and …

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🧪 MPN Pathways: Empowered Voices in Research – FDA 101 Webinar

🧪 MPN Pathways: Empowered Voices in Research – FDA 101 Webinar Date: Thursday, June 5, 2025Time: 5:00–6:00 PM CTFormat: Live via ZoomRegistration: Sign up herempnadvocacy.com+4Reddit+4The Patient Story+4 Join us for the next session in the MPN Pathways: Empowered Voices in Research series, focusing on the U.S. Food and Drug Administration (FDA). This webinar will provide …

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