| Website | eurordis.org |
| Blog | rarediseaseblogs.net |
| @eurordis | |
| Category | Other |
| Phone | 0033156535210 |
| denis.costello@eu... | |
| Employees | 30 |
| Founded | 1997 |
| Description | European Voice of Rare Disease Patients |
EURORDIS is a non-governmental patient-driven alliance of patient organisations representing more than 423 rare diseases patient organisations in over 43 countries
Eurordis’ mission is to build a strong pan-European community of patient organisations and people living with rare diseases, to be their voice at the European level, and - directly or indirectly - to fight against the impact of rare diseases on their lives.
To this end, Eurordis undertakes activities on behalf of its members, notably in favour of:
* Empowering rare disease patient groups
* Advocating rare diseases as a public health issue
* Raising public rare disease awareness, and also that of national and international institutions
* Improving access to information, treatment, care, and support for people living with rare diseases
* Encouraging good practices in relation to these
* Promoting scientific and clinical rare disease research
* Developing rare disease treatments and orphan drugs
* Improving quality of life through patient support, social, welfare and educational services
