The Association of citizens for rare diseases Life With Challenges in cooperation with the preschool Detska Radost Skopje, begin a series of lectures on the subject of rare diseases and special needs under the project called – Life is a puzzle, let’s collect it together for the children joy. We are thankful that the municipality Gazi Baba is supporting this project and we hope that it will be a start of a larger project in the area of education and social inclusion. It is a pilot program intended as an incentive for education of the professional involved in the education system. We hope to raise awareness about specific needs of families that face with rare diseases and special needs and to support discussion about appropriate inclusion of children with rare diseases and special needs in the schools in Macedonia.
Се надеваме дека овој проект ќе развие соработка на здружението со образовните работници, бидејќи како што секогаш кажуваме важна е соработка на секое ниво за подобар квалитет на живот на семејствата со ретки болести.
The first workshop е was realized on 03.03.2015 by Nada Spandzevska on the subject of diagnostic and treatment of speech impediments in children, starting from communication in:
– receptive speech;
The goal of the workshop was:
- 1. Introducing parents with the work of the speech therapist
– Detecting speech impediments in children
– The way of work of the speech therapist
- 2. Introducing parents with the most often speech impediments
The second workshop was realized on 28.04.2015 on the subject of rare diseases and special needs by Vesna Aleksovska, patient representative.
The goal of this workshop was introduction to the subject of rare diseases, the influence that they have on families and how to find ways to help and support them .
- What are rare diseases?
- Rare diseases in EU and Macedonia?
- Special needs of children with rare diseases?
- How to support families that face life with a rare disease?
- Discussion and questions.
The third workshop по was held on 12 May, 2015, on the subject of Stress in communication of rare diseases.
The subject was focused on the caregivers as it is very important to take care for your own well being while you are taking care of others. Especially when you are taking care of someone with a rare disease or a disability.
When you take care of your self you have more strength to take care of other in the long term. The health of caregivers has influence of everyone around.
That is why this workshop was focused on different tools and ideas for reducing stress and improving well being.