Research related links
DEBRA organisations
Epidermolysis Bullosa Medical Research Foundation (EBMRF)
A non-profit organisation, based in California, who raises money to support EB research at Stanford University and the University of Southern California.
A European website which provides a central resource for information on rare diseases and orphan drugs. Its aim is to improve the quality of care and treatment for individuals with rare diseases, through the provision of information.
Eurordis (European Organisation for Rare Diseases)
An alliance of patient organisations and individuals working in the area of rare diseases. It provides a voice for rare disease patients at European level and acts to improve their quality of life.
Medical Research Charities Group (MRCG)
The Irish umbrella organisation for patient organisations participating in medical research. MRCG provides very valuable support and acts as a unified voice for its members.
Irish Platform for Patient Organisations, Science and Industry (IPPOSI)
IPPOSI provides a platform for discussion and consensus between all groups involved in improving medical care for patients and also acts to disseminate relevant information to all its members.
Genetic and Rare Disorders Organisation (GRDO)
This Irish non-governmental organisation acts as a central support and voice for voluntary groups working in the area of genetic and rare disorders and aims to improve services and supports for patients.
Provides an educational guide to medical genetics for patients and their families.
A U.S. based information database on clinical trials being undertaken in the U.S. and around the world.
An information portal with details of on-going clinical trials and information about the clinical trials process.