EURORDIS is a non-governmental patient-driven alliance of patient organisations representing more than 434 rare diseases patient organisations in over 43 countries.
The EURORDIS Policy Fact Sheets are available on their website. These two page documents are intended as advocacy tools to support the implementation of key policy recommendations and facilitate their transposition into national plans and strategies on rare diseases. Most recent topics include: Centres of Expertise; European Reference Networks; National Helplines; European Network of Helplines; Respite Care Services and the Needs and priorities for research in the field of RDs.
- National help lines for rare diseases (December 2009)
- Centres of Expertise (December 2009)
- The European Network of Rare Disease Help Lines (December 2009)
- European Reference Networks of Centres of Expertise (December 2009)
- What is a rare disease? (June 06)
- What is an orphan drug? (June 06)
- Respite Care Services for Rare Diseases (June 06)
- Paediatric drugs and rare diseases (June 06)
Ichthyosis Awareness Month 2019 : more than ever needed