Newsletter Summer 2018

DE News Summer 2018

Dear all,

It is with great pleasure we present this very special Anniversary Edition of our Dystonia Europe Newsletter. You will learn about our 25 year history and also get the latest news from our Anniversary events that took place in Brussels last April.

Our Anniversary celebrations kicked off with a special lunch event in the European Parliament in Brussels, hosted by MEP Merja Kyllönnen from Finland. For the first time ever there was an event exclusively on dystonia in the Parliament. Seven MEPs (from Sweden, Romania, Ireland, Croatia, Romania, Italy) were present to connect with  Dystonia Europe delegates from their countries.

We were delighted that two of the founders from 1993, Alistair Newton and Prof Maja Relja attended our meeting and participated in the program. Alistair’s presentation about the history of Dystonia Europe you will find on pages 14-20. Prof Relja gave the keynote address in the Parliament. Here she presented the preliminary results of her ongoing Dystonia Survey about time of diagnosis,  access to treatment and quality of life. Read about it on page 8.

In this special Anniversary Edition you also find stories and information on activities organised by our member associations. It is the national organisations that form Dystonia Europe and we value their work very much. Thanks for all that you do for dystonia patients and their families in your countries.

At our last General Assembly in Brussels the recently formed German dystonia association ‘Dystonie und Du’ became a member of DE. We are now 22 member associations from 18 countries in Europe. Read more about them on page 46.

Many thanks to the Dystonia Europe board members, our advisors and all the medical professionals and researchers who work in the interest of people with dystonia. You all make a huge difference for those affected by this neurological disorder that presents itself in so many different ways.

We are also very grateful to our partners and sponsors for their support and collaboration. Many years of us all working together laid the foundation for what Dystonia Europe is today.

We also have followers around the world who contribute to raise awareness of dystonia. Working together is the only way forward!

Last but not least, the Dystonia Europe staff, our Executive Director Monika Benson, who exceeds all expectations of what an employer could ask for. Her dedication and hard work throughout so many years, first as President for 6 years, and since 2013 as our Executive Director. It is a pleasure to work together. Her energy is an inspiration and her first priority is always those affected by dystonia, the patients and their families, thank you!

This newsletter is our largest newsletter ever, but we also celebrate 25 years of work and collaboration for dystonia across Europe. We hope you will take the time to read it and please let us know if there is anything special you would like to see featured in our next issue. On behalf of the Dystonia Europe Team I wish you a wonderful summer.

Merete Avery - President

Dystonia Europe
Merete Avery




Read this story and many more in our Summer newsletter. Download this now!