Our vision is achieving the best possible quality of life of patients and families with rare diseases, through best possible social and health services.
Our mission is developing solutions and politics through implementation of activities for improving quality of life of patients and families with rare diseases. The goal of Life With Challenges is to help and support patients and families that face life with rare diseases. Our mission is realized through the following activities:
- Helping and informing people with rare diseases, creating and sustaining communication between patients
- Raising awareness in society through education about the problems of patients with rare diseases
- Organization of public events, congresses and meetings with a goal to educate and inform
- Support of research and education about rare diseases
- Organization of info centres for people with rare diseases
- Organization of cultural events for raising public awareness
- Distribution and printing of info-materials about rare diseases
- Social rehabilitation for people with rare diseases
- Finding funds for treatment of patients
- Documentation of patients with rare diseases
- Advocating for patients’ rights ; Raising awareness in society about rare diseases, about physical and psychological consequences.
- Helping and informing people with rare diseases.
- Helping doctors to get information about diagnostics, treatment and rehabilitation of rare diseases.
- Communication with other organizations about rare diseases in R. Macedonia and in the world.
- Communication with health institutions in R. Macedonia for better treatment of people with rare diseases.
What are we doing?
- Negotiating with the Ministry of Health
- Informing the President of the Government and the Minister of Finance about the importance of treatment for patients with rare diseases
- Raising awareness to get more support from the people in Macedonia
- Cooperating with the media to raise the level of awareness about our problems
- Cooperating with other patient organizations to act together about important patient issues