About us

A world in which people affected by rare diseases have real chances of diagnosis and treatment, offering them opportunities for community integration.
To increse the quality of life for people affected by Prader Willi Syndrome and other rare diseases.
   1. to facilitate access to information about rare diseases;
   2. to create a national data base on rare diseases;
   3. to create a support network between patients affected by the same disease;
   4. to create a support network between specialists and families;
   5. to stimulate research in the field of managing rare diseases;
   6. to collaborate with international organizations and networks;
   7. to stimulate early diagnosis;
   8. to prevent and manage disability at different levels: 
Community level: 
   - through information campaigns increasing the awareness of people and future parents about the risk of disability occurrence and prevention methods;
   - through advocacy campaigns on stimulating the use of orphan;
Group level: 
   - training, information and counseling for parents and future parents; training and information for specialists;
Individual level: 
   - individual information and counseling of the patient or parent;
   · people affected by rare diseases in Romania;
   · families;
   · specialists involved in the diagnosis and management of these diseases;
We chose this target group as we wish to provide adequate and efficient services, by involving those who reflect the beneficiaries’ voices (NGO, patients, families, specialists), as experts in defining their own wishes and needs.