Learning about rare diseases
01 February 2020 - 29 February 2020
Boris Radosavljevikj - Goce 12, Bitola, North Macedonia
Hosted by Association of citizens for rare diseases LIFE WITH CHALLENGES
This year we have several events.
On 1st of February we started with a campaign - Learning about rare diseases- 29 rare diagnoses translated into Macedonian and Albanian language - video, audio, and web preparations. This will continue even in March with other 30 rare diagnoses.
In Bitola with Hepar Center, in cooperation with the municipality and 2 highs schools, we will have a public event in the center of the city for raising awareness. Until now we had a mother with a child who has ITP (Zivka Parket), who together with her class students painted t-shirts for RDD.
In Ohrid there will be a big event on the 29th in the center of the city for raising awareness - painting hands, posting pictures, giving support to rare disease families - it is organized by Gordana Loleska, mother of a child with Alport Syndrome.
In Skopje, in cooperation with the Macedonian Medical Student Association, we are organizing a survey between the medical students on rare disease knowledge and raising awareness on the 28th of February at the University in Skopje. We will further (probably April) organize a press conference to present the results and have lectures on rare diseases presented by specialists doctors and patients and parents.
In April- May we also plan a round table discussion on prenatal and neonatal screening on rare diseases with a focus on the importance of screening for PKU.