Help to children with rare (orphan) diseases
Project of Charity Foundation "Zhiva"
One of the most important areas of work of Zhiva Charitable Foundation is to help children with rare (orphan diseases, including those with short bowel syndrome).
What are Orphan Diseases?
Orphan diseases are rare and uncommon medical conditions, encompassing more than one thousand variations, which include genetic and oncological, as well as blood and body tissue diseases. In Europe and the United States, diseases that are found in less than 2,000 people are classified as rare.
In Russia, the qualifying statistics for Rare Disease are not more than 10 cases per 100,000 of the population. Today, there are 223 recorded rare diseases in Russia, among which are 24 chronic and life threatening illnesses. According to statistics between 1 and 1.5 million people now live with rare chronic disease, and between 13-30,000 suffer from life threatening illness.
Orphan diseases are rare and uncommon medical conditions, encompassing more than one thousand variations, which include genetic and oncological, as well as blood and body tissue diseases. In Europe and the United States, diseases that are found in less than 2,000 people are classified as rare.
In Russia, the qualifying statistics for Rare Disease are not more than 10 cases per 100,000 of the population. Today, there are 223 recorded rare diseases in Russia, among which are 24 chronic and life threatening illnesses. According to statistics between 1 and 1.5 million people now live with rare chronic disease, and between 13-30,000 suffer from life threatening illness.
Objectives:
- Fundraising for children treatments with orphan diseases
- Socio-psychological rehabilitation of children and their families
- Participation in the training of medical personnel, advanced training of doctors in the field of orphan diseases, including the financing of training and internships in other cities and countries
- Organization of volunteer actions
- Host public awareness campaigns and conferences to highlight the problems of children suffering from orphan diseases
- Assistance to hospitals: acquisition of drugs, purchase of modern medical equipment and supplies
- Fundraising for children treatments with orphan diseases
- Socio-psychological rehabilitation of children and their families
- Participation in the training of medical personnel, advanced training of doctors in the field of orphan diseases, including the financing of training and internships in other cities and countries
- Organization of volunteer actions
- Host public awareness campaigns and conferences to highlight the problems of children suffering from orphan diseases
- Assistance to hospitals: acquisition of drugs, purchase of modern medical equipment and supplies
