Neuigkeiten von ProRaris, Mai 2026 (DE) / Nouvelles de ProRaris, Mai 2026 (FR)
📍Editorial, Aktuell, Aus der Bundesverwaltung,Mitglieder im Gespräch, Gastbeiträge ..... ➡️Link(DE-FR): https://proraris.cmail19.com/t/r-e-tunkill-klijdlhull-jt/
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FIND
relevant at the national level on rare diseases and orphan drugs (information in Deutsch, Italiano, Français and English) **************************************************************************************************************************************************************** ORPHANET SCHWEIZ-SUISSE-SVIZZERA data in numbers as of June 2026 : 359 Expert centers, 133 Patient organisations, 717 Research projects, 374 Clinical trials, 36 ongoing registries... **************************************************************************************************************************************************************** Access these resources in the database at “https://www.orpha.net/” by filtering by disease name and country “Switzerland.” The site is available in 9 languages
Orphanet International Services
- An inventory and classification of rare diseases
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Ontologies
Symposium: Rare Diseases in Neurology - Thursday, July 2, 2026, Bern
🟢Symposium: Rare Diseases in Neurology🟢
🗓️Thursday, July 2, 2026 14:00-17:30
📍Auditorium Maurice E. Müller, Inselspital Bern
🔍Universitätsspital Bern The event focuses on recent advances in rare neurological and neurodevelopmental disorders across the lifespan.
🔍Topics include the transition of neurodevelopmental disorders from childhood to adulthood, new perspectives on autoimmune encephalitis, and challenges in rare childhood neurological disorders from clinical care to cellular research models. Emerging therapies such as N-Acetyl-L-Leucine and Fampridine for rare neurological diseases are discussed, alongside new insights into the expanding spectrum of rare dystonic syndromes and future precision medicine approaches.
➡️Programm, Registration : " https://neurologie.insel.ch/de/lehre-und-forschung/lehre/fortbildungen/symposium-rare-diseases-in-neurology "
➡️Participation also possible via livestream www.neuronews.ch
News in Switzerland
Events-Conferences
22-08
2026
SVOI-40 years Anniversary Scientific Symposium, 22.08.2026 Luzern
🟢SVOI-40 years Anniversary Scientific Symposium🟢 ➡️Saturday 22.08.2026 Nottwill, Luzern ➡️ Medical treatment on OI Children. Franck RAUCH, Shriners Hospital Montreal, CA ➡️Orthopedic surgery in OI, Guus JANUS, Isala Zwolle, NL ➡️ For affected persons and phxsicians. CME certification by FMH is planned. ............................➡️ PDF: https://www.glasknochen.ch/wp-content/uploads/2026/03/Programm-SVOI-Jahrestagung-2026_de_el.pdf
10-09
2026
Internationale Tagung "Blockchain und Biomedizin - mit einem Schwerpunkt auf Rare Diseases" 10.September 2026-UZH, Zürich
🔵Die Veranstaltung bietet eine Plattform für Fachvorträge, Diskussionen und Vernetzung mit internationalen ExpertInnen aus Medizin, Technologie, Recht und Ethik🔵 ➡️ Datum: 10. September 2026, ganztags. ➡️ Ort: Kleiner Hörsaal Ost, Universitätsspital Zürich ➡️ ➡️ Programm, Anmeldung und Flyer: " https://www.merh.uzh.ch/de/veranstaltungen-meldungen/aktuelle-veranstaltungen/humanforschungundblockchain.html "
12-09
2026
Meeting della Comunità FOP ,12 e 13 settembre 2026, Locarno/Riazzino, Ticino (Svizzera)
🦋Meeting della Comunità FOP – 12 e 13 settembre 2026, Locarno/Riazzino, Ticino. ➡️"Associazione Noi ci Siamo" Associazione Svizzera per la Fibrodisplasia ossificante progressiva 💛Il loro desiderio è che tutta la comunità FOP partecipi con entusiasmo: pazienti, famiglie, caregiver, professionisti e amici. Insieme rendere questo evento un’esperienza speciale, capace di rafforzare i legami che ci uniscono e di far sentire ogni persona parte di una grande famiglia. 🔍"https://noicisiamo.ch/" ➡️"info@noicisiamo.ch"
24-09
2026
Symposium Maladies Endocriniennes Rares - 24 Septembre 2026, HUG, Genève
🟢Le service d’endocrinologie, diabétologie et métabolisme adulte et l’unité d’endocrinologie et diabétologie pédiatrique de Genève organisent la 1ère édition du Symposium Maladies Endocriniennes Rares🟢. ➡️24 septembre 2026 de 12h45 à 18h ➡️Maison de l’enfance et adolescence (Boulevard de la Cluse 26, 1205 Genève). 📍Ce symposium se veut un moment d’échanges interdisciplinaires autour de thématiques cliniques et scientifiques d’actualité. ➡️Plus d'information à suivre...
