Réunion des patients - Rome 2010

La réunion internationale suivante a été enregistrée spécialement pour les patients ayant des problèmes liés à l'aspergillus - conçue pour fournir une ressource aux patients et répondre à certaines de leurs questions. Certaines conférences sont désormais également disponibles sous forme de podcasts au Magasin itunes - recherchez «podcasts aspergillus et aspergillose»

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Patients meeting November 2018

DateOrateurTitre
Novembre 2018 Findra Setianingrum Le rôle de la surveillance du niveau d'Aspergillus Ig G chez les patients CPA opérés
Megan Bridgeland Help us develop the new patients website
Graham Atherton Help us research a new QoL questionnaire
Cliquez ici pour voir la réunion/version alternative/Facebook recording

Ressources mentionnées:

http://www.nacpatients.org.uk (Old patients website)

https://www.aspergillosis.org (New patients website in development)

Patients meeting August 2018

DateOrateurTitre
Août 2018Graham Atherton Des progrès incroyables dans le développement de nouveaux poumons à partir de cellules souches
Felix Bongomin Étude de poussière, notifications de canicule, Aspergillosis Trust, Croix-Rouge, nouveau site Web Patients
Cliquez ici pour voir la réunion/Alternate version/Facebook recording

Graham Atherton also spoke of the new patients advocacy group Trust pour l'aspergillose that is collecting ‘selfies’ of celebrities to support research and awareness of aspergillosis. If you know a celebrity, let them know.
We are also about to begin the redesign of the patients website we need your help!

Ressources mentionnées:

Hot weather – heatwave alerts from NHS England

How to cope in hot weather – NHS

https://www.blf.org.uk/British Lung Foundation website

Patients meeting July 2018

DateOrateurTitre
Beth Bradshaw Carte portefeuille / porte-monnaie, nouveau diagnostic au point de service, nouvelle initiative de bien-être
Graham Atherton Étude de poussière, notifications de canicule, Aspergillosis Trust, Croix-Rouge, nouveau site Web Patients
Cliquez ici pour voir la réunion/Alternate version/Facebook recording

Due to a last minute cancellation we had to change our program with little notice, but we dont think you can see the joins in what we talked about!

Beth again led the way and told us about progress with the wallet/purse information card designed for patients to carry in case of emergency, or just in cases where they need to be able to explain what aspergillosis is! She then moved on to a stunning new development in diagnostics that has just emerged. Diagnosing acute invasive aspergillosis needs to be completed as quickly as possible in order for treatment to begin so that the patent has the best possible chance of the best outcome. There are several barriers to this happening – some tests take a long time to run, others have to be done in batches dur to the high expence involved and still others need highly skilled operation and interpretation. If only there were simple devices on which we could spot a drop of blood and get a yes/no result in a few minutes. Well now there are! Two companies IMMY et OLM diagnostics have developed lateral flow devices (most people will be familiar with this technology used for home pregnancy testing) that will detect a fungal infection in 30 mins at the bedside. Simple to use, interpret and store these deveices are valuable additions to the clinicians toolkit.
 Intended for acute invasive aspergillosis this technology may see more uses in the future, possibly including screening for chronic fungal infections such as ABPA.

Last month Prof Malcolm Richardson launched a new project to be carried out in his department (The Mycology Reference Centre Manchester which is closely attached to NAC). They are going to look at the microbes that are found in the homes of people who have aspergillosis (i.e. the home’s microbiome). If successful we might well be able to establish a link between the microbes in peoples homes and aspergillosis. 

We still need more samples so if you have aspergillosis please send us some dust – for further instructions and a kit send your postal address and aspergillosis type to graham.atherton@manchester.ac.uk.

Graham Atherton also spoke of the new patients advocacy group Trust pour l'aspergillose that is collecting ‘selfies’ of celebrities to support research and awareness of aspergillosis. If you know a celebrity, let them know.
We are also about to begin the redesign of the patients website we need your help!

Ressources mentionnées:

Hot weather – heatwave alerts from NHS England

How to cope in hot weather – NHS

https://www.blf.org.uk/British Lung Foundation website

Patients meeting May 2018

DateOrateurTitre
Mai 2018Beth Bradshaw Conception de notre nouvelle carte de portefeuille / porte-monnaie pour les patients atteints d'aspergillose. 
Progrès contre l'aspergillose: nouveaux médicaments antifongiques
Malcolm Richardson We need your dust for research – An Appeal
Chris Harris Un rappel que les nouvelles lois sur la protection des données affecteront la façon dont nous conservons vos données et comment, après avoir besoin de demander votre consentement pour les utiliser
Cliquez ici pour voir la réunion (version alternative)

Beth led the way this month involving patients in the design of a new concertina-style credit card sized multifunctional information leaflet that is intended for patients to show when needed. For example in the case of an emergency admission to tell the attending doctors some details about aspergillosis and its specific requirements, a little about the specific limitations of antifungal drugs and more. This was a very popular idea and consequently will be developed further. Beth then went on to discuss the hugely encouraging testing results of several new antifungal drugs that was announced at the Advances Against Aspergillosis conference in February 2018

Prof Malcolm Richardson launched a new project to be carried out in his department (The Mycology Reference Centre Manchester which is closely attached to NAC). They are going to look at the microbes that are found in the homes of people who have aspergillosis (i.e. the home’s microbiome), and he showed us preliminary results that suggest that there is a lot of Aspergillus in the homes of those patients we have looked at so far, but we need to look at many more to establish a strong pattern. If successful we might well be able to establish a link between the microbes in peoples homes and aspergillosis. 

This study may seem an obvious thing to do but until very recently we did not have the technology to be able to do this. Advances in microbe identification techniques have made this possible .

BUT we will be able to do nothing unless you can help us! We need a pinch of household dust from the best microbe collector in your home – that is to say your vacuum cleaner dust bag. We will provide gloves, facemask and bag to do this so please don’t send us any dust until you have received our letter – to get a letter contact myself at graham.atherton@manchester.ac.uk with your postal address and I will pass on your details to Prof Richardson – we need 100 samples to do the experiment!

Ressources mentionnées:

Centre national d'aspergillose (NAC)

 Manchester Regional Mycology Manchester Centre

General Data Protection Regulations 2018 (GDPR)

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