Staying up to date on rare disease information

Learn how to bring current information to you using tools such as Google News, RSS feeds or alerts from PubMed

There are many information sources which can help you keep up with the latest news on rare diseases: newspapers and other media, scientific publications, databases, health agencies, organisations. To save time and to find the specific information you need, this video tutorial by EURORDIS volunteer David Oziel will show you how to set up a personalised section on Google News, receiving email alerts or subscribing to RSS feeds on Google News or PubMed

DOWNLOAD the presentation used in this session (DOWNLOAD the transcript)

Page created: 17/05/2013
Page last updated: 10/04/2018
The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases