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TreatSMA At NICE Conference

TreatSMA at NICE Conference

So today, Dawn, Gary and Kacper attended the 2019 NICE conference in Manchester. Celebrating 20 years of NICE and attending various sessions on different aspects of the NICE appraisal process and how they plan to make trials more accessible and get drugs quicker to market etc. We were not invited to this event, but as a team, we thought it important that TreatSMA attend.

It was very interesting, and we also asked a few poignant questions after some of the sessions.

We also took along a bound book of pictures and messages that were emailed to TreatSMA, from the many wonderful families, children and adults who participated in our #wearyourhurt campaign on Tuesday 7th May.

A copy of the book was given personally to Sir Andrew Dillon (Chief Executive of NICE), Meindert Boysen (Director of Centre for Health and Technology Appraisal, NICE; pictured, centre left), Helen Knight (Technology Appraisals Programme Director, NICE) and Blake Dark (Commercial Medicines Director, NHS; pictured above, centre right, and below with the book). They have some interesting bedtime reading for tonight.

It was a very interesting and engaging day where they listened and acknowledged our work, especially the many thousands of emails that the community sent to them on #wearyourhurt day. We got the feeling from them that this made a massive impact. So thank you once again for getting involved and taking the time to help with the campaign.

A positive event all round, and now we wait to hear. We have not been told anything else regarding any announcements and do not want to speculate on timeframes. As soon as we know, you will know.

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