Networks
A voluntary federation of all European national organizations supporting people affected by Charcot-Marie-Tooth disease. We will: Promote communication and collaboration between CMT organizations/charities. Work together to fund research projects that are beyond the scope of the individual organizations. Work together to advocate for greater CMT research funding from organizations such...
The working together of Gaucher patient groups has already lead to consistency in treatment of certain manifestations of Gaucher Disease throughout Europe. Inspired by this and by their successes in achieving humanitarian aid for the most severe patients in Eastern Europe member countries of the EGA have grasped the challenge...
Focus on supporting LAM research and will coordinate communication with existing LAM patient groups. The Federation will work together to raise funds for ongoing scientific investigation, will coordinate and collect Europe wide data and will establish a European LAM Tissue Bank; the new Federation will bring together and will collaborate...
ENERCA is an acronym for European Network for Rare and Congenital Anaemias. It started back in 2002, funded by the European Commission, with the purpose of offering an improved public health service to professional medical practitioners and patients in every aspect of rare anaemias.University of Barcelona Red Cell Pathology Unit C/Villarroel, 170 –...
Information for people with acute intermittent porphyria, variegate porphyria or hereditary coproporphyria and their families. Further details can be accessed at here.
The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit dedicated to accelerating biotech innovation for rare disease treatments through science-driven public policy. We can do more with the science we already have and bring life-saving treatments to millions of people suffering from rare diseases. Currently, there are fewer than 400...
Tampa, FL (May 2, 2011) – A protein associated with Alzheimer’s disease clogs several motors of the cell transport machinery critical for normal cell division, leading to defective neurons that may contribute to the memory-robbing disease, University of South Florida researchers report.