NDIAG- Nephrogenic Diabetes Insipidus Advocacy Group is recognizing the first of many National Nephrogenic Diabetes Insipidus Awareness Day's on April 27th 2026. A big step forward in Awareness and Advocacy efforts for those living with this rare kidney disease, NDI.
Join the International Waldenstrom Macroglobulinemia Foundation on May 1–3, 2026, in Columbus, Ohio, for IWMF’s cornerstone educational event! The IWMF Ed Forum brings together patients, caregivers, healthcare professionals, and researchers for three days of learning, sharing, and meaningful connection at the Hilton Columbus Downtown. The U.S. Educational Forum offers in-depth, expert-led education on all aspects …
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Pericarditis Alliance offers a once a month virtual support group for patients and their families to check in, connect and learn from each other. They invite speakers to talk about topics such as adopting an anti-inflammatory diet and functional medicine. At the end of each meeting, they invite participants to join in a short …
Continue reading "Pericarditis Alliance Virtual Support Group Every 1st Saturday"
Stop by Greenwood Brewing on Thursday, May 7 between 6pm to 8pm for a rare disease community meet up! This is a wonderful chance to connect with one another over craft beer and finger foods in a relaxed setting. Greenwood Brewing will feature a special Zebra Hop brew for the meet up. Zebra Hop was created by Jonathan Kowalske of Component Brewing, …
The National Organization for Rare Disorders (NORD®) invites you to join us in Phoenix, Arizona for a day of education and connection. Our Living Rare Forum is designed to help you navigate your life with a rare disease or as a rare caregiver. Each forum features expert speakers, dynamic educational sessions, and meaningful community-building opportunities. …
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The National Organization for Rare Disorders (NORD®) invites you to join us in Denver, Colorado for a day of education and connection. Our Living Rare Forum is designed to help you navigate your life with a rare disease or as a rare caregiver. Each forum features expert speakers, dynamic educational sessions, and meaningful community-building opportunities. …
Continue reading "Make Connections & Build Community at Living Rare, Living Stronger Colorado"
Survivor Support Group – Monthly Virtual Meetings Dates: Third Saturday of each monthTime: 3:00 PM ETLocation: Online via ZoomRegistration: Register here The Raymond A. Wood Foundation's Survivor Support Group offers a monthly virtual gathering for adult survivors of hypothalamic-pituitary brain tumors. Moderated by brain tumor survivor Jason Burris, these sessions provide a safe space to …
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Prescription drug out-of-pocket costs are expenses that patients pay for medical care that insurance does not cover, and are one of the 9 issue areas assessed on NORD’s State Report Card. We assess five key protections that some states enact to limit patient out-of-pocket costs for prescription drugs, and one of these protections are copay …
In this session, our Community Engagement team will provide a comprehensive, high-level overview of NORD's volunteer programming and the strategic initiatives. This is designed to give you a clear understanding of our mission and the various ways you can make an impact. We will conclude with an open-floor discussion, providing a dedicated space for you …
Rare Cancer Coalition at ASCO! May 29 – June 2, Chicago, IL 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 …
Pericarditis Alliance offers a once a month virtual support group for patients and their families to check in, connect and learn from each other. They invite speakers to talk about topics such as adopting an anti-inflammatory diet and functional medicine. At the end of each meeting, they invite participants to join in a short …
Continue reading "Pericarditis Alliance Virtual Support Group Every 1st Saturday"
National PKU Alliance (NPKUA) supports an annual grant program to fund the most critical projects working to improve the lives of individuals with PKU. The 2026-2027 NPKUA Grant Program is now accepting proposals for funding for PKU research. Eligible applicants must have an advanced degree(s) and hold a position at an established clinical/academic/research institution. Investigators …
NORD member @United Mitochondrial Disease Foundation's Mitochondrial Medicine Conference 2026 -- June 17-20 in Orlando -- brings together families and global leaders, scientists, and clinicians for four days of cutting-edge research, emerging therapies, and meaningful collaboration with patients to accelerate progress toward a cure. Patients and families can connect with top specialists, join educational sessions …
Building strong relationships with lawmakers is one of the most effective ways to advance rare disease policy and ensure the needs of our community are heard. The time between legislative sessions can be one of the most valuable opportunities to establish meaningful, lasting relationships with elected officials and their staff. During this webinar, we’ll teach you how to build and nourish relationships with your state lawmakers. We’ll also discuss strategies for engaging members …
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Survivor Support Group – Monthly Virtual Meetings Dates: Third Saturday of each monthTime: 3:00 PM ETLocation: Online via ZoomRegistration: Register here The Raymond A. Wood Foundation's Survivor Support Group offers a monthly virtual gathering for adult survivors of hypothalamic-pituitary brain tumors. Moderated by brain tumor survivor Jason Burris, these sessions provide a safe space to …
Continue reading "🌟 Raymond A. Wood Foundation Survivor Support Group – Monthly Virtual Meetings"
Pericarditis Alliance offers a once a month virtual support group for patients and their families to check in, connect and learn from each other. They invite speakers to talk about topics such as adopting an anti-inflammatory diet and functional medicine. At the end of each meeting, they invite participants to join in a short …
Continue reading "Pericarditis Alliance Virtual Support Group Every 1st Saturday"
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