Foundation News

GBS | CIDP Spain holds Virtual Conference on Rare Disease Day

By Volunteer Alex Real of Madrid

GBS | CIDP Spain held their first Virtual Conference on Feb. 28, 2022, Rare Disease Day on Dysimmune Inflammatory Neuropathies(DIN) in collaboration with Neuromuscular Barcelona, from Hospital de Sant Pau, a Center of Excellence conducting significant research in antibodies.

After a warm welcome by Lisa Butler, Jean-Philippe Plan├žon from EPODIN, introduced us to the current European scenario for DIN patient organisations. Then, the 2022 Benson Fellow, Elba Pascual, presented the novelties in terms of diagnosis, root causes and disease mechanisms in GBS, CIDP, MMN, etc. Of special interest were the role of antibodies and neurofilaments. Dr Luis Querol, a pioneer in CIDP antibodies and biomarkers, detailed current and future clinical trials in GBS, CIDP, MMN and other DIN pathologies, stressing the importance of patients and patient organisations in clinical trials and experimental trial design to cater for the low numbers in rare diseases. This was followed by Yolanda Calle’s presentation about the value and role of occupation therapy in GBS rehabilitation and adaptation in chronic DIN syndromes. Physiotherapist Irene Pedrosa provided an extensive guide to rehabilitation depicting how we patients can help ourselves. Finally, there was an extremely interesting and lively Q&A session, on top of the queries during the event.

Stay tuned for more ways to find resources and connect internationally.