Join us for an online social hour hosted by Aidan M. for those in their 20’s and 30’s with ADEM, AFM, MOGAD, NMOSD, ON, or TM! Connect with others and discuss what it’s like living with a rare neuroimmune disorder during the transitions of young adulthood. Ask questions, share your stories, or just listen – […]
There are a number of different autoimmune disorders with similar features to Multiple Sclerosis (MS), such as neuromyelitis optica spectrum disorder (NMOSD) and myelin oligodendrocyte glycoprotein antibody disorder (MOGAD). These diseases share striking similarities that ultimately affect the way in which our communities understand and manage the diagnosis. Hence, it is of utmost importance for […]
Join us for a Rare Disease Day celebration. Connect with others and listen in during our #RareRoundtable conversation.
The Ohio Rare Action Network invites you to join us for Rare Disease Day in Cleveland Tuesday, February 28, 2023 at 8:30 AM Case Western Reserve University, Tinkham Veale Ballroom, 11038 Bellflower Road, Cleveland, OH 44106 You’re invited to join patients, caregivers, and other rare disease advocates as we raise awareness and celebrate the rare […]
MEET YOUR EXPERTS – Triff deine Experten! Zum Tag der seltenen Erkrankungen 2023 lädt NEMOS ein zum offenen Gespräch Wann: 28. Februar 2023 Durchgängig zwischen 10 und 18 Uhr Wie: Einfach vorbeischauen! Online (via Zoom) ohne Anmeldung über folgenden Link: https://bit.ly/meet-NEMOS-experts @Was? Mit Expertinnen und Experten ins Gespräch kommen, Fragen stellen, Gelegenheit zum offenen Austausch, Info-Schnipsel […]
Join autoimmune patient advocates nationwide on March 29, 2023, for the National Coalition of Autoimmune Patient Groups’ first virtual Congressional Fly-in Day. Advocates will meet virtually with legislators and staff to discuss important issues, including improving patient access and research funding. Whether you’re a veteran advocate or looking to get involved in legislative advocacy for […]
Join us May 1-3, 2023 in Philadelphia, Pennsylvania for the RARE Drug Development Symposium 2023 Collaboration is the foundation of success in rare disease research. Knowing who to work with, what strategies to use, and how to prepare for discussions can help you overcome barriers posed by small populations and limited funding. At the Rare […]
We are glad to invite you to save the date for the EMSP Annual Conference 2023, to be held under the theme of Social Policies between 4-7 May 2023 in Helsinki, Finland. Held as an in-person event co-hosted by the Finnish MS Society (Neuroliito), the conference will offer the latest MS developments, expert insights, and networking with the community. If […]
Each year, Global Genes convenes one of the world’s largest gatherings of rare disease patients, caregivers, advocates, healthcare professionals, researchers, partners, and allies at the RARE Patient Advocacy Summit.
La Asociación de Lucha contra la Esclerosis Múltiple (ALCEM), La Fundación Sumaira y NMO Argentina convocan a la actividad a realizarse el 28 de octubre de manera virtual y con inscripción previa. Su finalidad es ampliar información sobre esta rara patología y proporcionar formación sobre el tema. Está dirigido a profesionales de la salud, pacientes […]
