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 …
Continue reading "Webinar: Effective Lawmaker Engagement for Rare Disease Advocates"
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"
Are you a collegiate student interested in starting a NORD Students for Rare chapter on campus? Come and learn more about the program and next steps during our New Chapter Info Session! Our July session will take place on July 7 at 6:00 p.m. ET. We look forward to seeing you there! Register Here
About the Conference More about the event here: https://nnpdf.org/conf/ Each year, the NNPDF community gathers for something truly special, a chance to reconnect, welcome new families, and share the journey with people who genuinely understand life with Niemann-Pick disease. Our annual conference is filled with meaningful conversations, lasting friendships, and the kind of support that …
Continue reading "NNPDF Family Support and Medical Conference"
You’re invited to attend National PKU Alliance’s “Living Our Best PKU Life” Community Conference, taking place Thursday, July 16, through Sunday, July 19, 2026, in Lombard, Illinois, a suburb of Chicago. This family-friendly event, held at the Westin Chicago Lombard, is NPKUA’s largest PKU gathering in the country and invites anyone touched by PKU, including …
Continue reading "National PKU Alliance’s “Living Our Best PKU Life” Community Conference"
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"
The TBCK Foundation is excited to host “Black Ties for Rare”, a family-friendly gala to honor and celebrate those affected by rare diseases. They warmly invite you to join on Sunday, July 19, from 5-10 PM at the Hyatt Regency Aurora, CO for an evening of connection, storytelling, and community. "Get ready for an unforgettable evening …
Continue reading "The TBCK Foundation “Black Ties for Rare”"
As state legislative sessions wind down, join NORD’s Rare Action Network (RAN) for an end of session policy & advocacy wrap up. During this webinar, we’ll discuss bills we tracked across the country, celebrate our hard-fought advocacy wins, and identify key opportunities for growth and improvement. We’ll also discuss potential areas of focus as we …
The Hydrocephalus Association will host HA CONNECT, its 19th Annual National Conference on Hydrocephalus, in Indianapolis from July 23–25, 2026. Families, clinicians, researchers, and industry leaders will gather to connect, learn, and explore the latest advancements in hydrocephalus treatment, management, and everyday living. hydrocephalusconference.org
If you are impacted by a rare disease, you are likely spending countless hours navigating health insurance. In this session, we will discuss common insurance barriers faced by patients and caregivers living with a rare disease, and tips to overcome them. This panel incorporates several unique perspectives for every step in your journey that you …
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"
Adult Cystinosis Webinar: Beyond the Kidneys Date: Thursday, August 6 Time: 4:00 PM CT Location: Zoom ☆ Topics of Discussion ☆ • Transitioning from pediatric to adult care • Gaps in adult cystinosis care • Psychosocial experiences and quality of life • Opportunities to improve long-term support and care
Are you a collegiate student interested in starting a NORD Students for Rare chapter on campus? Come and learn more about the program and next steps during our New Chapter Info Session! Our August session will take place on August 10 at 12:00 p.m. ET. We look forward to seeing you there! Register Here
Come on out and support Maeve! Raffles and 15% of drink sales benefit NORD. RSVP Here
*Win a 2026/ 2027 Membership to Salmon Falls Country Club Hollis, ME $100 minimum donation per chance 125 chances to win Donate June 11- July 9th Winner selected LIVE July 9th 8:00pm River Tap & Grill 52 Golf Course Lane, Hollis, ME Thank you, Salmon Falls Country Club/ River Tap & Grill for your generous …
Continue reading "Support Calley Forbes Fundraising for NORD Running for Rare!"
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"
Please complete this form to access the requested resource.
