Information Campaign – World Rare Disease Day
Are rare diseases rare? On February 28, the world celebrates the International Day of People with Rare Diseases. How important is psychological support for children and parents? What can be done by all of us to be more tolerant, understanding and to look at differences in positive terms with view of the skills and abilities of each child?
Do you know that 75% of patients with rare diseases in the world are children! On the last day of February, we will celebrate a day that is an expression of our support for people with rare diseases. According to statistics of 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 our country. The purpose of the international day is to attract public attention and raise public awareness.
Karin Dom Foundation organizes an information campaign on the occasion of World Rare Disease Day – February 28. A lecture will be held on the topic “Modern genetic knowledge and awareness of society and doctors on the topic of rare disease” with Prof. Dr. Lyudmila Angelova, MD.
The event is aimed at medical students.
You can register and reserve your spot by filling out the following form HERE.
We are waiting for you on 28.02 (Tuesday) from 17:30 at Karin Dom, Ivan Stanchov conference hall, address: Varna, 86 A Tsar Osvoboditel Blvd. or online on ZOOM.
PROGRAM World Rare Disease Day: 28/02/2023 /Tuesday/, moderator of the event will be Nikoleta Yoncheva, PhD in speech therapy, specialist from Karin Dom.
17:30 – Welcoming the students and symbolic release of colorful balloons from the roof of Karin Dom
18:00/18:10 – Opening remarks – Borislava Cherkezova, Executive Director of Karin Dom Foundation
18:15/18:20 – Ivayla Ivanova – member of AMSB
18:20/18:40 – “Modern genetic knowledge and awareness of society and doctors on the subject of rare disease” – Prof. Dr. Lyudmila Angelova, MD – head of the Medical Genetics Academic Sector
18:40/18:50 – Isabel Nikolaeva and Nikolay Nikolaev – parents of Ralitsa with Leigh Syndrome
18:50/19:00 – Prof. Dr. Ruzha Pancheva-Dimitrova, MD – Department of Hygiene, Nutrition and Dietetics
19:00/19:10 – Violeta Stancheva and Svilen Stanchev – parents of Valeria with Coffin-Siris syndrome
19:10/19:20 – Discussion and Q&A
19:20 – Closing remarks – Dr. Nicoleta Yoncheva
The event is organized by Karin Dom Foundation together with Varna Medical University and the National Network AMSB (Association of Medical Students in Bulgaria).
You can follow the meeting on ZOOM on February 28 at 5:50 p.m. at the following link:
Topic: Information campaign – World Rare Disease Day
Time: Feb 28, 2023 05:30 PM Sofia
Join Zoom Meeting
https://us02web.zoom.us/j/87986329655?pwd=NWl0cjF1Y1NWZWw0d3EydkhhMWJidz09
Meeting ID: 879 8632 9655
Passcode: 779591
We hope that the meeting will be useful for future doctors who will encounter rare diseases in their practice, and in this way we will ease the families with children with rare diseases on their way in search of opportunities for rehabilitation and treatment of their children. Karin Dom supports the World Rare Disease Day initiative, the main goal of which is to raise awareness among the public and help diagnose and treat those affected more quickly.
Karin Dom supports families and children with rare diseases, from a very early age. Through the early intervention service or at the therapy center, parents can receive information and support about raising their child, be connected with families of children with similar conditions, or be referred for consultation with an appropriate specialist.
#rarediseaseday #karindomvarna #karindom #кариндом #28February #WorldRareDiseaseDay
