ERN-RND Coordination office based at the Institute of Medical Genetics and Applied Genomics, University Hospital Tübingen welcomed our patient advocates on 30 January 2020 in Tübingen, Germany.
The aim of this meeting was to discuss how the coordination office and ERN-RND as a whole can work with patient advocates and their organisations to ensure that the patient perspective is fully taken into account to pursue efforts in improving care and advancing research in the field of rare neurological diseases.
Who was present?
ERN-RND coordination office:
- Holm Graessner, ERN-RND coordinator
- Carola Reinhard, ERN-RND project manager
- Sanja Hermanns, ERN-RND CPMS helpdesk & training manager
- Alicia Brunelle, ERN-RND communication manager
- Annemarie Post, Project manager, Science management team
Patient advocates :
- Astri Arnesen, President of the European Huntington Association
- Lori Renna Linton, Euro-HSP
- Mary Kearney, FARA Ireland
- Monika Benson , Executive director of Dystonia Europe
- Marek Parowicz, founder of AHC18+ e.V.
- Lubomír Mazouch, Spolek pro Atypické Parkinsonské syndromy (Polish association for Atypical Parkinsonian Syndromes)
Agenda of the day
- Framework for ePAG representatives’ involvement in the ERNs
- Communication collaboration between ERN-RND & patient advocates
- Patient journeys
- Holm Graessner: “Preliminary results of the care need survey “
- Annemarie Post: “Research priorities survey, next steps”
- Sanja Hermanns: “Introduction to CPMS”
- Tobias Haack, Institute of Medical Genetics and Applied Genomics, University Hospital Tübingen: “Genetic testing in rare neurological diseases”
- Tübingen Children’s Hospital, clinical site visit by I. Krägeloh-Mann, S. Gröschel
- Department of Neurology clinical site visit by ERN-RND clinical coordinator Ludger Schöls
- Research institutes visit by Ludger Schöls: Hertie Institute for Clinical Brain Research and the German Center for Neurodegenerative Diseases (DZNE) – Tübingen site
- Presentation by Stefan Hauser (DZNE): “Modeling rare neurological disorders by using induced pluripotent stem cells”
Some next steps:
- Focus on the creation of more guidelines (different diseases) for best care possible of rare neurological disease (RND) patients
- Creation of patient journeys
- Mapping of communication channels for effective dissemination of information
This meeting was a great opportunity for the ERN-RND coordination office to listen to patient advocates’ ideas on what they think still needs to be done in regards to disease knowledge to ensure timely diagnosis and improve the care of RND patients. In addition to this, it was the opportunity for us to update our patient advocates on our latest activities (webinars, CPMS, care need/research priorities surveys) and show them our on-site clinical and research facilities.
Thank you to our patient advocates for their visit!
You will find more pictures of this day on the ERN-RND facebook page here.