Fil d’infos

Sur cette page, retrouvez toutes les dernières actualités des sites et associations reliées à la dystonie, afin de leur donner de la visibilité. Amadys, bien entendu, mais également les associations étrangères, l’Alliance Maladies Rares, etc. Les liens pointent directement sur les articles des sites concernés, dans leur langue d’origine. Pour les articles que nous avons décidé de mettre en avant, c’est dans la rubrique “Articles & traductions” que ça se passe.

It's time for Dystonia Matters Digital

2020-09-25 Dystonia UK

Welcome to Dystonia Matters Digital! We are thrilled that you will be joining us at #DMDigital. Please check your email inbox for your welcome pack which contains joining instructions for each session. If you have any technical difficulties, please email [email protected] We can't wait to see you! ...

Dystonia | We share what it's like

Here is our second poster to raise awareness of Dystonia, a Neurological Movement Disorder which causes muscle spasms or uncontrollable movements. A BIG thanks to ADSG members for providing verses and their lovely photos for our poster. You are welcome to share our links to posts! Do not forgot to...

Know Your Rights

2020-09-24 Dystonia UK

This session hasn't started yet. Please check back on Saturday 26th September from 1.30pm. Please bookmark this page so you have it to hand easily on the day. Reminder: To gain access to Dystonia Matters Digital, we ask that you complete the attendee agreement form*. Your entry to the event will...

The Future of Neurology

2020-09-24 Dystonia UK

This session hasn't started yet. Please check back on Saturday 26th September from 9.30am. Please bookmark this page so you have it to hand easily on the day. Reminder: To gain access to Dystonia Matters Digital, we ask that you complete the attendee agreement form*. Your entry to the event will...

Mental Health Matters

2020-09-24 Dystonia UK

This session hasn't started yet. Please check back on Friday 25th September from 1.30pm. Please bookmark this page so you have it to hand easily on the day. Reminder: To gain access to Dystonia Matters Digital, we ask that you complete the attendee agreement form*. Your entry to the event will...

Campaigning for Change

2020-09-24 Dystonia UK

This session hasn't started yet. Please check back on Friday 25th September from 9.30am. Please bookmark this page so you have it to hand easily on the day. Reminder: To gain access to Dystonia Matters Digital, we ask that you complete the attendee agreement form*. Your entry to the event will...

Welcome to Dystonia Matters Digital

2020-09-24 Dystonia UK

Our Chair of Trustees Chris Bradshaw, welcomes you to Dystonia Matters Digital YouTube Video https://www.youtube.com/watch?v=oBZQ5BoFe58 We are really excited to present to you our amazing speakers and panellists, and cannot wait to see you on the day! You are now all set to attend Dystonia Matters Digital sessions. Why not share...

Lana's story

2020-09-24 Dystonia UK

Lana Maria has a provisional diagnosis of paroxysmal dystonia and dyskinesis. She is undergoing further tests to rule out epilepsy and blood work to investigate her paroxysmal dystonia and dyskinesis. Her mum, Georgia, tells us Lana's story. Lana was given a provisional diagnosis of paroxysmal dyskinesis in September 2020 at...

Donald's story

2020-09-24 Dystonia UK

I’ve had cervical dystonia for 37 years. Because of that I’m personally invested in dystonia. I’m always looking for answers and to find ways to cope better with its impact on my daily life. I try to be as positive as possible and keep my mind occupied with a...

Julia's story

2020-09-22 Dystonia UK

Julia lives with neck dystonia (cervical dystonia). Here she shares her story of living with dystonia and pregnancy. Neck dystonia is characterised by continuous or intermittent muscle contractions which cause abnormal, often painful, repetitive movements of the neck and head. The movements can lead to the head and neck twisting (torticollis)...

"Me and my brain" - EFNA art competition

2020-09-15 Dystobot

L’EFNA (Fédération Européeenne des Associations Neurologiques) propose jusqu’en décembre une compétition artistique. Le thème, pour les adultes, est : Créez un dessin, une...

Andy's story

2020-09-11 Dystonia UK

Andy's wife, Mandy, has neck dystonia (cervical dystonia). Andy and Mandy are joint coordinators of the Berkshire Dystonia UK Support Group and Andy serves as a Trustee of Dystonia UK. Neck dystonia is characterised by continuous or intermittent muscle contractions which cause abnormal, often painful, repetitive movements of the neck and head....

Dyrking av grønnsaker får Atle til å glemme dystonien

Etter at Atle fikk dystoni, måtte han trappe ned med fotografering som var hans store hobby. Men han fant ny glede i grønnsakdyrking. På lokallagsmøtet som Bergen og omland lokallag arrangerte 1. september, fortalte Atle om hvor givende han synes det er å drive med grønnsaker. Så givende at han...

Groupe de parole sur la fratrie

2020-09-07 BRAIN-TEAM

En partenariat avec la Fondation Groupama, le réseau Maladies Rares Méditerranée propose un groupe de parole à destination des frères et s?urs d'enfants porteurs de handicap. Les objectifs de ce groupe sont de permettre aux frères et s?urs de rencontrer d'autres enfants vivant la même situation, de leur offrir un espace...

Følg NDF på Instagram

Nå kan du følge Norsk Dystoniforening (NDF) på Instagram! Vi har opprettet konto på det sosiale nettstedet, og satser på å legge ut bilder fra det som skjer i foreninga og temaer som omhandler dystoni. Men også motiver og tekster fra hverdagslivet som kan være til glede og inspirasjon. I...

Launch of European Dystonia Research Consortium: EurDyscover

2020-09-05 Dystonia Europe

On Tuesday 7 July the kick-off meeting of the EurDyscover Consortium took place on Zoom. The coordinator is the University Hospital of Würzburg, Neurology department, and Jens Volkmann and Chi Wang Ip. Other partners in the consortium are: ? Antonio Pisani, IRCCS Fondazione Santa Lucia, Laboratory of Neurophysiology and Plasticity,...

Your Dystonia Awareness Month Toolkit

2020-09-02 Dystonia UK

We will be releasing new resources throughout the month so keep an eye on our social media and keep checking this page for updates! Downloadable resources Dystonia Awareness Month A4 posters Social media photo frame ...

Hopp for Dystonia 2020!

September er her, og det betyr at det er klart for Jump for Dystonia 2020 ? eller oversatt til norsk; Hopp for Dystonia 2020. Målet med kampanjen er å sette søkelyset på dystoni og gjøre folk mer bevisst på sykdommen. September er «Dystonia Awareness Month» ? bevissthetsmåned. I år presenteres...