Shqip
Albanian Rare Diseases Association becomes part of EURORDIS (European Association of rare diseases)
EURORDIS-Rare Diseases Europe is a unique, non-profit alliance of over 700 rare disease patients organization from more than 60 countries that work together to improve the lives of the 30 million people living with a rare disease in Europe.
By connecting patients, families and patient groups, as well as by bringing together all stakeholders and mobilizing the rare disease community, EURORDIS strengthens the patient voice and shapes research, policies and patient services.
Jointly to Eurordis our Association aims at:
Our vision is to enable better lives and cures for people living with a rare disease.
Our mission is to work across borders and diseases to improve the lives of people living with a rare disease
To this end, EURORDIS undertakes activities on behalf of its members, notably in favor 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 them
- Promoting scientific and clinical research in rare diseases
- Developing rare disease treatments and orphan drugs
Improving quality of life through patient support, social, welfare and educational services