2018 évènement à ne pas manquer chez nos Break sitters UK

voici la description

 

The Rare Disease UK Annual Meeting will be held 13 June.

Speakers will include:

– Luke Pembroke, who is affected by severe haemophilia B
– Natasha Coastes, elite disability gymnast living with mast cell activation syndrome
– Dr Jayne Spink, Chair of Rare Disease UK and CEO of Genetic Alliance UK
– Amy Hunter, Director of Research, Genetic Alliance UK and Rosa Spencer-Tansley, Research Officer, Genetic Alliance UK
There will also be the opportunity to meet with a range of stakeholders working in rare diseases, including: academics, patients, patient organisations, clinicians, and other industry representatives.

It will also be an opportunity to find out more about the UK Strategy for Rare Diseases, the results from the mental health research of rare disease patients, and the experiences of children and young people affected by rare conditions.

Finally, you can hear about future Rare Disease UK activities and take part in discussions about social care provisions for families affected by rare diseases.

http://DESCRIPTION The Rare Disease UK Annual Meeting will be held 13 June. Speakers will include: – Luke Pembroke, who is affected by severe haemophilia B – Natasha Coastes, elite disability gymnast living with mast cell activation syndrome – Dr Jayne Spink, Chair of Rare Disease UK and CEO of Genetic Alliance UK – Amy Hunter, Director of Research, Genetic Alliance UK and Rosa Spencer-Tansley, Research Officer, Genetic Alliance UK There will also be the opportunity to meet with a range of stakeholders working in rare diseases, including: academics, patients, patient organisations, clinicians, and other industry representatives. It will also be an opportunity to find out more about the UK Strategy for Rare Diseases, the results from the mental health research of rare disease patients, and the experiences of children and young people affected by rare conditions. Finally, you can hear about future Rare Disease UK activities and take part in discussions about social care provisions for families affected by rare diseases. SHARE WITH FRIENDS Facebook Facebook Messenger LinkedIn

l’errance diagnostique

bonjour

Nous avons entre 2 ans et plus de 22 ans d’errance diagnostique pour les personnes atteintes d’une maladie rare . Ces chiffres sont issus de questions posées à nos internautes et membres.

Nous referons une enquête prochainement et vous remercions de vos commentaires et avis avant de lancer cette enquête sur l’errance diagnostique

vous pouvez aussi voir l’association SWAM en Grande Bretagne en cliquant sur le nom SWAN

 

Histoire de Adelyne

ici

 

https://d1nwj7iktnaddv.cloudfront.net/Websites/CorporateCommunications/Videos/new06.03.16%20Adelyn’s%20Story%20-%20Corp.%20Comm%20-%20HD%20FINAL.mp4

 

et si vous ne comprenez pas merci de réclamer la traduction que je vous ferai dimanche prochain et vos commentaires sont ici [contact-form][contact-field label=’Préno’ type=’name’ required=’1’/][contact-field label=’E-mail’ type=’email’ required=’1’/][contact-field label=’Commentaire delyne story’ type=’textarea’ required=’1’/][/contact-form]

10 eme journée nationale des maladies rares

Bonjour chers amis

la journée nationale maladies rares qui se déroule tous les ans le 29 février aura lieu mardi prochain ( en effet pas de 29 février en 2017).

 

Mais savez vous pourquoi un 29 février?

réponse dans notre prochain article

l’évènement des maladies rares

si vous avez des questions [contact-form][contact-field label=’Nom’ type=’name’ required=’1’/][contact-field label=’E-mail’ type=’email’ required=’1’/][contact-field label=’vos questions’ type=’textarea’ required=’1’/][/contact-form]