Register today for the 2026 MSD Virtual Summit! This FREE, two-day, online gathering will bring together researchers, clinicians, families, advocates, and partners from around the world. Through shared knowledge, lived experience, and innovative efforts, we move closer to better care and future therapies for Multiple Sulfatase Deficiency. In the coming weeks, we will update this page …
On September 19, the 2026 Face Forward Patient Support Summit will bring together patients, caregivers, clinicians and advocates for an inspiring day of connection, education, and empowerment. This event will feature: Expert medical presentations on the latest RHS research and treatment advances Interactive workshops and wellness sessions for patients and caregivers Networking and advocacy opportunities …
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7th Annual Free All-Community Virtual MSA Conference - September 19-20, 2026 MSA Hub / Conference Registration MSA-Hub.circle.so Exciting lectures with both clinicians & researchers about MSA diagnosis, orthostatic hypotension, alpha-synuclein, biomarkers, disease mechanisms, and new treatments and clinical trials. There are also Ask the Doctor and Ask the Scientist Q&As, plus a Caregivers Breakout. Expert …
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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 …
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Join Mission MSA for our Path to a Cure in Philadelphia! On Sunday, September 20 at 9:00am ET, the MSA community will come together at Penn Park in partnership with the University of Pennsylvania, a designated MSA Center of Excellence, to honor and uplift those living with multiple system atrophy. This gathering fosters unity, encouragement, …
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Rare Cancer Day, September 23 Rare Cancer Day is an annual awareness day devoted to shining a light on rare cancers and the issues people living with them face. Spearheaded by the NORD Rare Cancer Coalition®, which is composed of 30+ rare cancer-specific member organizations, Rare Cancer Day is observed on September 23 to highlight the challenges patients face …
Join the National Ataxia Foundation and Friedreich's Ataxia Research Alliance in advocating for Ataxia and rare disease related policy issues during their annual United Against Ataxia Hill Day on September 23, 2026! Advocates will have the opportunity to attend virtual meetings with members of Congress and their staffers to tell their stories and relay the …
Registration is now open for the 2026 WDA Annual Conference, taking place September 25–26 in Chicago. Co-hosted by Northwestern University Feinberg School of Medicine’s Wilson Disease Center of Excellence and the Wilson Disease Association, the conference will bring together healthcare professionals, researchers, advocates, industry partners, patients, and caregivers from across the Wilson disease community. The …
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NORD's free virtual event for Spanish-speaking rare disease patients and families (October 3) Registration is now open for NORD’s first #LivingRare virtual event entirely in Spanish! https://bit.ly/4i6JPzG Join us Saturday, Oct. 3, from noon to 2:30 p.m. ET on Zoom for a free event bringing Spanish-speaking rare disease patients, families, and caregivers together for education …
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Ya está abierta la inscripción para el primer evento virtual #LivingRare de NORD, completamente en español! 🎉 https://bit.ly/4i6JPzG Únase a nosotros el sábado 3 de octubre, del mediodía a las 2:30 pm ET en Zoom para un evento gratuito que reúne a pacientes de enfermedades raras de habla hispana, familias y cuidadores para educación y …
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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 …
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Pericarditis Alliance is so pleased to offer three new monthly virtual support groups for patients and their families to check in, connect, and learn from each other. Registration is open for one month at a time and will be open for each group by the Friday after the previous meeting. Register for each group through …
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