Our CEO, Sara, attended the ERN-RND annual meeting.
Sara was representing leukodystrophy patients as part of her European Patient Advocate role.
The ERN-RND is a European Reference Network established to support patients and families affected by rare neurological diseases (RND) requiring specialised knowledge, treatment and resources.
To find out about the ERN-RND, visit: ERN-RND website
Topics discussed included treatment eligibility panels for ALD, MLD and Krabbe, European standards of care and the JARDIN project (https://jardin-ern.eu/).
The photo is of the attendees at the event, which included Dr Nicole Wolf and Dr Wolfgang Köhler.
