Rare Disease Blogs

Learn more about rare diseases and orphan drugs through opinions given by key players in these sectors. Join in and leave your comment too!


National Alliances for Rare Diseases

National Alliances federate patient organisations from a wide range of diseases within their particular country.


European action in the field of rare diseases

"Expertise on rare diseases is fragmented across the EU. Even the very existence of some of these diseases is not fully recognised.


Two milestones in EU Rare Disease Policy

The Commission Communication and Council Recommendation have established a strategy for meeting the challenge of rare diseases.


Recent EU proposal renews hope

Organ donation and transplantation (ODT) is back on the European political agenda.


A public health priority

Promoting rare diseases as a public health priority is one of the most important stated objectives to EURORDIS.


Why rare disease research matters

Advocating for increased and more targeted funding for research into rare diseases


ECRD 2010 Krakow: Momentum for rare diseases

An unprecedented number of participants attended the largest ever European Conference on Rare Diseases (ECRD), held in Krakow, Poland on May 14 & 15, 2010.

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