This page is dedicated to the JARDIN WP6 dedicated to National care pathways and ERN referral systems, and more specifically the task 6.2: Develop model (reference) care pathways for rare diseases or groups of rare diseases.
To learn more about the general objectives and structure of the JARDIN joint action, please visit the official project page.
The aim of this task, undertaken by multiples ERNs, is to develop a European model care pathway for RDs or groups of RDs.
By combining clinical expertise, patient perspectives, and existing evidence, the project seeks to map current practices across Europe, identify gaps and variations in care, and co-create a structured, multidisciplinary pathway that supports timely, coordinated, and patient-centered care throughout the disease course.
The JARDIN WP6 has suggested a standard methodology for developing model care pathways, accessible on this link: https://jardin-ern.eu/wp-content/uploads/2025/01/JARDIN-Care-Pathways-Toolkit-HCPs-and-Patients.pdf
A set of additional documents and templates have also been provided in a Toolkit: Care Pathways Toolkit – JARDIN Joint Action
This toolkit aims to support and encourage the development of model care pathways across ERNs, but its use is flexible and can be adapted to the specific challenges and needs of each project.
The ERN EURO-NMD ALS Care Pathway working group
For this task, the ERN EURO-NMD opted to develop a Care pathway for Amyotrophic Lateral Sclerosis (ALS), and for this purpose a panel of experts and patient representatives was formed, including a core group and a larger group of members reflecting the various disciplines identified as relevant in the context of ALS care:
| Neurology | Occupational therapy |
| Neuropsychology | Speech and language therapy |
| Clinical Psychology | Dietetics/Nutrition |
| Pulmonology | Clinical trial coordination |
| Gastroenterology | Nursing |
| Genetic counselling | Neurophysiology |
| Clinical genetics | Neuroradiology |
| Rehabilitation | Palliative care |
| Physical therapy |
For the planification of objectives and tasks, the working group is taking inspiration from the Methodology developed by the JARDIN WP6 team:
