September 30, 2019

Dystonia Awareness Month 2019 & Dystonia Talks

First of all a great THANK YOU to all of you who took part in our Dystonia Awareness Month on-line activities last September. The success would not have been possible without your support and help in sharing our posts, videos, quotes etc.

For the third year Dystonia Europe was taking part in the Dystonia Awareness month.

At our last conference D-DAYs 2019 in London we launched Dystonia Talks – a digital project to raise awareness of dystonia and funded by a grant from Boston Scientific Foundation.

During the D-DAYs we invited patients, carers, dystonia patient leaders from across Europe, experts, researchers and industry to be interviewed and video-recorded. A total of approximately 20 videos are being developed. Eight of those were ready to be published during our Awareness Month. They can be found on our Youtube Channel:

The remaining videos will be published starting in December this year.

We are grateful to Boston Scientific Foundation for giving us the opportunity to work on such an important project in order to increase awareness and understanding of dystonia. We believe these videos can be re-posted, shared and used for the next few years.

Other posts during Dystonia Awareness Month included inspirational quotes, facts, and articles from our Dystonia Europe newsletter. This very diverse and interesting content was published throughout the month on all our social media channels: Facebook, Twitter, Instagram and for the first time we were also more active on Linked-In.

During the month the amount of followers on our social media channels increased:

  • Facebook from 3776 to 4046
  • Instagram from 647 to 844
  • Twitter from 575 to 673

Facebook average reach/day increased from 2018:

  • Sept 2018 – 2586
  • Sept 2019 – 4026

The most popular posts on Facebook were the posts in fact format containing inspirational quotes and various dystonia facts. They had the most viewers and shares.

We are very pleased with this year’s awareness activities and we are already looking forward to September Awareness month 2020.
If you have any special ideas of what to do on-line or in your country please send us an e-mail and let us know at

The more we are working together to raise awareness of dystonia the more dystonia will be heard of and recognized.

Monika Benson

Executive Director

Dystonia Europe