Reason why number 1

Why do we need the Rare Disease Framework available on www.rare4schools.org?

I'm going to leave the legal reasons aside for the time being that will come at a later date. I'm even going to leave the moral imperative or my own personal reasons as a parent. Instead I'm going to look at an example from a research study "A comparative study of educational provision for children with neurogenetic syndromes: parent and teacher survey" which asked teachers and learning assistants who worked with children with one of four rare diseases about their knowledge of the rare diseases and the implications.

The first thing that was apparent was the respondents were clear they had significant gaps in their knowledge. TmThe concerning thing wasn't the gaps though. Crazy right? I mean what could be more concerning than the responsible for a child having gaps in their knowledge of a rare diseases.

The most concerning thing was that the educators didn't feel the gaps in their knowledge made a difference. They felt that the learning difficulties the children faced were no different from any more common conditions and that the child's medical condition did not impact learning.

So let's unpick that.

One of the rare diseases that children in this particular study group had was Prader Willi Syndrome.

Now, imagine the following scenario:

The child is given a problem by their Maths class teacher and struggles to give an answer. The teacher assumes the child doesn't understand the problem or can't do it and starts to help in the same way they would any other child. The truth however is far more likely linked to the complexities of the medical diagnosis.

The child will be expending an exorbitant amount of energy to hold themselves upright in their chair making them very fatigued due to the muscle weakness in the condition. This means that the correct support would be a high backed chair with arm supports all set at the correct height for the individual child.

To read more about this study and consider it's implications follow the link A comparative study of educational provision for children with neurogenetic syndromes: parent and teacher survey - Reilly - 2015 - Journal of Intellectual Disability Research - Wiley Online Library

Essentially what is clear is a need to address the knowledge of educators to ensure that students with rare diseases are not having barriers put in their way needlessly. The Rare Diseases Framework aims to do just that to lead to a world in which a rare disease is not a barrier to learning.