Delicious Kids Awareness Panel

Delicious Kids Awareness Panel

On the occasion of Rare Diseases Day, a panel on “Having Children with Rare Diseases” was held as part of the My Teacher Hold My Hand project.

In the organized panel, children / young patients and their families inform their teachers about themselves and their illness. A subtle child awareness panel on “Being a Child with a Rare Disease” was held on March 10 with the participation of representatives of about 20 different disease groups, their relatives and about 150 teachers on the Zoom platform.

Special Education Branch Manager Gulsen Ozar participated in a panel organized for Kindergarten and Psychological Counseling and Guidance teachers and the families of rare children / youngsters requested their teachers’ cooperation in the educational life of their children.

Melek Okur and Dr. In two sessions conducted by Hassan Hussein Selvi; “How do rare diseases affect children? What are the factors that affect the school process? What are the responsibilities of teachers and schools?” Asked the answer to the question.

Family and school collaboration

Speaking on the panel, Gulsen Ozar, Special Education Manager, emphasized the importance of raising awareness of the issue, as well as the treatment of children with chronic rare diseases that require permanent treatment, such as “get well soon”. He explained that in collaboration with the family, educators have a great responsibility to participate in the educational life without hurting the delicate children with their peers and they are working to raise awareness.

Fine Pediatric Awareness Panel, Acandroplasia, Xtrophy Vesica, Cystic Fibrosis, Glycogen Storage, Williams Syndrome, MPS LH-M-A-M-AV-AVP, S-AVF, S-AVF, AL-AVF, ALM. ), PKU (Phenylketonuria) Disease, Hermansky-Pudlak HPS Syndrome, MS Disease – Multiple Sclerosis Patients and their families as well as representatives of the association took the floor.

Families of children with some rare diseases, who have a serious health condition such as invisible disability, acute seizures, sudden lung bleeding, living a normal life in addition to low glycogen levels, said more diseases could be explained and awareness raised. Panel where they had the opportunity to talk about many things.

They have seen from educators, especially from special education teachers, the greatest support for their children with visible physical and mental disabilities, primarily for their self-care and independent involvement in social life, demanding that families become more sensitive to children with health problems. Reported. And raise awareness about fragile children with rare diseases. They wish them well in their work. The panel focuses on the academic achievements of children with disabilities as well as the motivational effects of children’s participation in artistic activities and participation in the school social environment.

Project Coordinator Melek Okur, at the end of the panel; He emphasized the importance of preparing an Individualized Education Plan (IEP) for special education and inclusion students and the importance of respecting differences in schools. He also points out the importance of recording the presence of a child with a chronic or rare disease at school, following up, visiting family and, if necessary, with the doctor following the child in the most appropriate manner.

What is a rare disease?

Any disease that affects a small percentage of the population is commonly referred to as a “rare disease.” The term “orphan disease” can be used interchangeably to describe the neglected state of a rare disease in medical and pharmaceutical circles. It is so named because its treatments are not considered profitable due to their high development costs and limited patient population and hence less financial and human resources are allocated.

There are about 6000 to 7000 different rare diseases in the world

Although diseases are rare when considered individually, their growing total currently affects 3.5% to 5.9% of the world’s population, an estimated 5 million people in Turkey, 30 million people in Europe and 300 million people worldwide.

More than 70% of rare diseases are due to genetics, the rest are due to infectious agents (bacterial or viral), toxins, side effects of treatment, allergies, etc. The result is formed. One or more genes may contribute to the disease. Genes may be inherited or may arise from scattered-random mutations.

Currently, there are about 400 rare diseases treated. However, researchers have made progress in recent years in diagnosing, treating and even preventing a number of rare diseases. In 2018, an estimated 3,500 active molecules target rare diseases worldwide in research and development processes. This number is more than double the level that existed 10 years ago. Also, the total number of orphan drug approvals, which was 84 between 1994-98, increased to 316 over a 4-year period from 2014 to 2018. Rare disease awareness in the world will increase among researchers, pharmaceutical companies, public administrators and society as well as increase patients’ access to healthy and participatory life.

You can view the full panel at our project’s YouTube address.

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