Funding transnational collaborative research through joint transnational calls is one of the major objectives of E-Rare. This is the most important and effective joint activity to enhance the cooperation between European scientists working on rare diseases and thus reducing the fragmentation of research in this field. E-Rare launches calls on a yearly basis. The topic and eligibility criteria are specified every year and therefore may vary from one call to the other.

The Netherlands
Phenotype Research for ALS modifyer discovery

Project Coordinator

Neurology University Medical Center Utrecht Utrecht
The Netherlands


Julian Grosskreutz Neurology University Hospital Jena Jena Jena, Germany
Philip Van Damme Neurology VIB Leuven Leuven, Belgium

Amyotrophic Lateral Sclerosis (ALS) is a disease leading to increaing weakness of voluntary and respiratory muscles. On average only 36 months after first signs of weakness the patient dies. Patients vary considerably in rate of disease progression. About 30% of patients either live shorter than 18 months of longer than 48 months, up to 60 months. PYRAMID's primary objective is to find those factors that protect patients from a rapid disease progression. The study will compare patients who die within 18 months to patients who live beyond 48 months. These factors, e.g. genes and proteins, are then prime candidates for the development of new treatments for this fatal disease.

E-Rare 2012 - Created by Toussaint Biger