216 ~ Reframe Rare – 4/7 ~

Rare Disease awareness month and day has concluded. Unfortunately this chapter could not be completed on time, but im publishing it anyway with an appeal to educators in all various learning institutions to kindly mark the 28th of February on their calenders and dedicate it towards support of the rare disease community.

Kelly brainstormed an easy presentation sheet (attached below) to enlighten learners as well as teachers on the method and etiquettes of dealing with their peers who may be living with a visible or invisible illness.

Please assist us in creating a shift of approach towards kids and colleagues with rare diseases so they do not have to carry the heavy burden and torment of being ridiculed for a situation beyond their control.

Let’s reframe the lens for those who are unaware of the true facts or have misconceptions and therefore treat people with rare diseases indifferently.

Most kids who grow up with congenital rare disorders testify to the lack of awareness in their learning environments. We’ve witnessed vulnerable kids as young as 10 years old not being able to handle the bullying and as a result, commit suicide. Imagine the pain of those mothers and families.

Kids are scoffed for appearing different or using mobility aids such as wheelchairs or survival machines. Most often the general stares and whispers are hard for them to bear.

Here is a snippet from our Rare Voices group to give a brief insight on the importance of teaching kids not to shun their peers who disabilities and be receptive.

Discussion:

Kelly: Hi – i have had a few requests from schools etc for a presentation to explain to kids about rare diseases. I have put this together – and have done some talking points – please let me have your thoughts

C: Love it nice and to the point and the video gave me goosebumps!

Kelly: I have tried to keep it light etc, but get kids to understand what we all really want – and that is acceptance. If we can get them learning that at such a young age – then we good

A: Easy to understand and gets the point across. Hopefully if we can get it to schools more teachers will be aware as well… I know I could have benefited from teachers that were more compassionate😉

N: Brings back so many memories of bullying all because kids didnt understand why I was sick or different and thought I was contagious…
This is so important 😭

N: My teachers would tell me if I excercised more I wouldn’t be so weak and sick.

Our rare voice team members approached institutions to participate in the movement, whereby some wholeheartedly took on the initiative of making the entire school #RareAware, but some also rejected and did not consider this type of educational content important.

Awareness matters
Advocacy changes lives

Without making an effort there is no change. Light extends through the littlest but various acts of kindness. Together WE can make the world a brighter and an easier place to live in ✨

Kindly share this with an educator or institution who you know will be willing to join in our future campaigns.

Thank you / Shukran