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Talking About SMA On Rare Disease Day

Talking about SMA on Rare Disease Day

On Tuesday the 26th the TreatSMA team met the new generation and talked about living with rare diseases like SMA.

TreatSMA were invited to exhibit at this year’s Rare Disease Day at Royal Holloway University. The day was organised so pupils from various schools had a chance to participate in some fun activities and learn about rare diseases. During the exhibition many pupils came to our stand and asked questions about SMA, about treatment and how it works. Some went further and asked why the NHS was not supporting reimbursement. We have also been asked “How do you cope?”- which is an amazingly thoughtful question for a 13 year old!

We did our best to explain. Of course having Dawn, Lia and Vinnie there representing different types and ages was very impactful and in general pupils and their teachers were very taken by TreatSMA!

We would like to say thank you to the Organisers of this event and hope that we will be invited next year to participate once again.

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