February 28 – People with Rare Diseases Day

On the last day of February, for the fifteenth consecutive year, the whole world will express its support for people with rare diseases. The main goal of the initiative is to raise public awareness and help to diagnose more quickly and treat those affected. The campaign was set up by EURORDIS and its Council of National Associations in 2008 and is gradually becoming a global phenomenon. Hundreds of cities take part in this large-scale initiative every year.

Karin Home supports the families of children with rare diseases from an early age. Through the early intervention service or in the therapy center, parents can receive information and support about raising their child, nutrition, communication, cognitive development, self-care, social skills, structuring and adapting the environment, and to be connected with the families of children with similar conditions or directed for consultation with a suitable specialist.

According to statistics from the World Health Organization in Bulgaria people with rare diseases are 5% of the population, which means that about 350,000 people are affected in Bulgaria. They are due to a gene mutation that causes a lack of activity of an enzyme.

75% of patients with rare diseases worldwide are children. Karin Home supports children and their families!

More than 6,000 rare diseases are known. Every 20th person in Bulgaria is potentially affected by such a disease. But for a very small proportion of rare diseases – only 5% – treatment is available, and for the remaining 95% there is still no approved drug therapy. 75% of patients with rare diseases worldwide are children. World statistics show that over 40% of patients with rare diseases are undiagnosed. Some of these diseases are so rare that they are very difficult to diagnose.

Cover and video: https://www.rarediseaseday.org/