Author: ERN-RND
New Leaflet on Friedreich`s Ataxia for adolescents online
In a new leaflet in our section disease knowledge we answer the questions what a recessive ataxia is, which symptoms indicate Friedreich`s ataxia and which forms of treatment are available.
EJP RD funded- 6th Call for ERN-Workshops
ERN-RND supports Open letter to the European Commission
EURORDIS Guide on patient involvement
EURORDIS – Rare Diseases Europe developed a short guide to explain in simple and practical terms how to involve patients and patient representatives in the development of clinical practice guidelines and consensus statements.
You may download the guide here.
ERN support Ukraine – Rare Diseases Hub Ukraine
Rare Diseases Doctors
The 24 European Reference Networks (ERNs) for rare and complex diseases are united to support all Ukrainian patients.
Rare Diseases Hub Ukraine
This application connects patients from Ukraine with a rare disease with organizations and hospitals, members of the European Reference Network (ERN), with the aim to provide the specialized medical support they may need during this emergency.
3 – 7 July 2022 | ISPRM/ESPRM/SPMFR
27 June – 1 July 2022 | 11th European Conference on Rare Diseases & Orphan Products
25 – 28 June 2022 | 8th Congress of the European Academy of Neurology – Europe 2022
21 – 26 May 2022 | 15th World Congress of Neuromodulation (INS 2022)
18 – 21 May| 34th European Academy Of Childhood Disability (EACD) Annual Meeting
28 April-2 May 2022 | 14th European Paediatric Neurology Society Congress
25 – 27 April 2022 | Solve-RD Annual Meeting
Venue: Prague, CZ
Continue reading “25 – 27 April 2022 | Solve-RD Annual Meeting”24 – 27 March 2022 | 16th World Congress on Controversies in Neurology
24 – 25 March 2022 | EPNS VIRTUAL Training Course: Acute Paediatric Neurological Diseases
7 – 9 March 2022 | 2nd Expert Summit on the Future of Deep Brain Stimulation
Publication: “Acute-onset paralytic strabismus in toddlers is important to consider as a potential early sign of late-infantile Metachromatic Leukodystrophy”
22 February 2022 | EPNS Case Discussion: Neuromodulation in Dystonia
Publication from the European Metachromatic Leukodystrophy initiative (MLDi)
9 February 2022 | EJPRD- ERICA Joint Workshop “Finding RD registry data in the Virtual Platform”
Publication: “Therapy Trial Design in Vanishing White Matter – An Expert Consortium Opinion”
8 February 2022 | EURORDIS Black Pearl Award Event
4 – 5 March 2022 | EJP RD workshop: Contemporary outcome measures in NeuroMuscular diseases
United Nations adopts Resolution on persons with rare diseases
33 new ERN-RND members!
9 – 11 December 2021 | Workshop: The Future of Medical Data Sharing in Clinical Neurosciences
Digital meeting
HBP, EBRAINS and the EAN invite the entire scientific community to join this workshop on the Future of Medical Data Sharing in Neuroscience.
