miércoles, 27 de julio de 2016

ECRD 2016: chi fa la differenza per i malati rari

ECRD 2016: chi fa la differenza per i malati rari

Eurordis, Rare Diseases Europe

La voce dei malati 
rari in Europa

Lingue





ECRD 2016: chi fa la differenza per i malati rari

Il panel di giovani all’ECRD 2016


L’8a edizione della Conferenza Europea sulle Malattie Rare (ECRD 2016) ha registrato la presenza a Edimburgo, in Scozia, di 750 partecipanti da oltre 50 Paesi.
Più di 120 moderatori, relatori e partecipanti al dibattito hanno animato la discussione sul tema di chi “fa la differenza nel modo di prestare assistenza alle persone affette da una malattia rara”, confrontandosi sulle azioni politiche e sulle iniziative nel campo della ricerca, della diagnosi, dello sviluppo, dell'autorizzazione e dell'accesso ai farmaci, dei servizi di assistenza, delle politiche sociali e della società globale.
Consulta il sommario esecutivo dell’ECRD 2016 che riporta le conclusioni di ciascun tema della conferenza, guarda le foto e gli oltre 200 poster.
Sono disponibili anche i video delle sessioni di apertura e di chiusura e della sessione plenaria che comprendono: 
  • Il saluto di Maureen Watt, Ministro della Salute del Governo scozzese, la cui citazione sui malati rari. ampiamente tweettata, ha dettato il tono della conferenza: “Non è solo una questione di ‘Quali sono le vostre difficoltà?’ bensì ‘Cosa conta di più per voi’ ”.
  • Igor Ban, sopravvissuto a un tumore raro e web content manager di RareConnect, che ha fatto un racconto toccante della battaglia della sua famiglia contro la leucemia linfoblastica acuta.
  • Un intervento del Professor Tom Shakespeare della Norwich Medical School del Regno Unito, che ha parlato della medicalizzazione della disabilità e che ha affermato, “Gli esseri umani possiedono forme e misure differenti, dobbiamo pensare di cambiare il mondo per accettare questo dato di fatto e non di cambiare noi stessi per adattarci al mondo”.
  • Alastair Kent, direttore di Genetic Alliance UK, che ha dichiarato, “come malati e come famiglie siamo parte della soluzione e dobbiamo pretendere che la nostra voce venga ascoltata”.
  • Un interessante panel di giovani sostenitori della causa delle malattie rare, in cui 6 relatori hanno raccontato le proprie storie personali e hanno anche discusso l'importanza dei social media nel mettere in contatto la comunità delle malattie rare.
  • Un discorso di Xavier Prats Monné, della Direzione generale per l’igiene e la sicurezza alimentare della Commissione Europea, che ha dichiarato, "La nostra priorità è e continuerà ad essere il sostegno alle malattie rare e alle reti di riferimento europee".
Tutte le presentazioni dei relatori della conferenza sono disponibili cliccando direttamente sui nomi dei relatori nei menu a tendina della pagina dedicata ai temi della conferenza sul programma di venerdì e ilprogramma di sabato.
L’ECRD è l’unico evento che riesce a coinvolgere l'intera comunità delle malattie rare (rappresentanti dei pazienti, ricercatori, professionisti del settore sanitario, industria, contribuenti, regolatori e politici) attraverso i confini nazionali e che promuove la condivisione delle conoscenze tra i partecipanti provenienti da diversi paesi europei e del mondo.
Il potenziale di trasformazione degli esiti dell’ECRD 2016 sarà quello di contribuire a informare le politiche europee, il Gruppo di Esperti della Commissione sulle Malattie Rare, la Joint Action europea sulle Malattie Rare 'RD-Action', il Programma europeo per la salute e il Programma quadro europeo per la ricerca e l’innovazione 'Horizon 2020'.
Segna in agenda la prossima ECRD, 10 – 12 maggio 2018 a Vienna, in Austria!

Eva Bearryman, Junior Communications Manager, EURORDIS
Traduttrice: Roberta Ruotolo
Page created: 27/07/2016
Page last updated: 27/07/2016

ECRD 2016: Курс на решающие изменения

ECRD 2016: Курс на решающие изменения

Eurordis, Rare Diseases Europe

Голос пациентов с редкими
заболеваниями в Европе

Languages





ECRD 2016: Курс на решающие изменения

Подиумная дискуссия, прошедшая в рамках молодежной секции ECRD 2016


8-я Европейская конференция по редким заболеваниям и орфанным препаратам (ECRD 2016), состоявшаяся в столице Шотландии Эдинбурге, собрала свыше 750 делегатов и гостей из более чем 50 стран.
Более 120 руководителей секций, докладчиков и участников подиумной дискуссии приняли участие в обсуждении главной темы конференции – решающих изменений в области борьбы с редкими заболеваниями. Они также обменялись мнениями о новых целевых программах и инициативах в областипроведения научных исследований, диагностики, разработки, регистрации и повышения доступности лекарств, обеспечения медицинской помощи и уходасоциальной поддержкииразвитии глобального общества.
Вы можете ознакомиться с Итоговым отчетом о проведении ECRD 2016, включающим принятые участниками формулировки решающих изменений по всем основным направлениям нашей деятельности, а также со сделанными в ходе конференциями фотографиями и более чем 200 постерами.
Видеозаписи открытия, пленарного заседания и завершающего пленарного заседания включают: 
С текстами всех представленных на конференции докладов можно ознакомиться, щелкнув по имени докладчика в соответствующей строке выпадающего меню повестки дня пятницы и субботы.
Конференция ECRD – это уникальное по своему масштабу и характеру мероприятие, потому что в ней принимают участие все стороны, вовлеченные в решение проблемы редких заболеваний (представители пациентов, ученые, врачи, производители лекарств, представители регулирующих органов и органов власти). Она устраняет все границы и барьеры и обеспечивает делегатам и гостям со всей Европы и с других континентов условия для обмена мнениями, идеями, знаниями и опытом.
Преобразующий характер итогов конференции ECRD 2016 заключается в том, что взятый на ней курс на пересмотр подходов к решению проблемы редких заболеваний найдет отражение в политике ЕС в этой области и ляжет в основу работы Экспертной группы Европейской комиссии по редким заболеваниям, а также будет учтен при реализации таких проектов, как Программа ЕС по совместным действиям в области редких заболеваний RD-ActionПрограмма ЕС в области здравоохранения иРамочная программа ЕС по развитию научных исследований и технологий Horizon 2020.
Следующая конференция ECRD пройдет с 10 по 12 мая 2018 года в столице Австрии Вене. Запомните эту дату!

Eva Bearryman, Junior Communications Manager, EURORDIS
Translation: Lingo 24
Page created: 27/07/2016
Page last updated: 27/07/2016

Wegbereiter im Bereich der seltenen Krankheiten auf der ECRD 2016

Wegbereiter im Bereich der seltenen Krankheiten auf der ECRD 2016

Eurordis, Rare Diseases Europe

Die Stimme der Menschen mit
seltenen Krankheiten in Europa



Languages





Wegbereiter im Bereich der seltenen Krankheiten auf der ECRD 2016

Das Podium junger Patientenvertreter auf der ECRD 2016


Die 8. Europäische Konferenz für Seltene Krankheiten und Orphan-Produkte (ECRD 2016) brachte über 750 Teilnehmer aus fast 50 Ländern in Edinburgh, Schottland zusammen.
Über 120 Sitzungsleiter, Referenten und Podiumsteilnehmer führten Debatten zum ThemaWegbereiter im Bereich der seltenen Krankheiten und tauschten sich aus über wegweisende Politiken und Initiativen in Forschung, Diagnosestellung,Arzneimittelentwicklung, Zulassung und Zugang,Gesundheitsversorgungsoziale Politik und globale Gesellschaft.
Lesen Sie die Kurzfassung der ECRD 2016 einschließlich der zum Abschluss jedes Themenbereiches identifizierten Wegbereitern, den Fotos und den über 200 Postern der ECRD 2016 Konferenz.
Videos der Eröffnungs-, Plenar- und Abschlusssitzungen sind ebenfalls verfügbar, einschließlich: 
  • Einer Grundsatzrede von Maureen Watt, Ministerin für psychische Gesundheit der schottischen Regierung, deren Aussage über Patienten mit seltenen Krankheiten „It's not just ‘What's the matter with you?’ but ‘What matters to you?’“, viel auf Twitter zitiert wurde und den Ton der Konferenz setzte.
  • Igor BanRareConnect Web Content Manager, der einen seltenen Krebs überlebte, erzählte in bewegenden Worten über den Kampf seiner Familie gegen seine akuter lymphoblastische Leukämie.
  • Einer Grundsatzrede von Professor Tom Shakespeare der Norwich Medical School, UK, in der er über die Medikalisierung von Behinderungen sprach: „Menschen kommen in verschiedenen Formen und Größen. Wie müssen die Welt dazu bringen, diese Tatsache zu akzeptieren, und nicht uns verändern, um in diese Welt zu passen.”
  • Alastair Kent, Direktor der Genetic Alliance UK, sagte: „Als Patienten und Angehörige sind wir Teil der Lösung und verlangen Gehör für unsere Stimme.“
  • Eines inspirierenden Podiums junger Patientensprecher, deren sechs Podiumsteilnehmer ihre persönlichen Geschichten über seltene Krankheiten erzählten und die Wichtigkeit von sozialen Medien für den Anschluss zur Gemeinschaft von Patienten mit seltenen Krankheiten debattierten.
  • Einer Rede von Xavier Prats Monné, Generaldirektor für Gesundheit und Lebensmittelsicherheit der Europäischen Kommission, in der er sagte: „Unsere Priorität ist und bleibt die Unterstützung von seltenen Krankheiten und Europäischen Referenznetzwerken.“
Sie gelangen zu den Präsentationen (auf Englisch) der Referenten, indem Sie auf den jeweiligen Namen in den Drop-down-Menüs im Programmüberblick für Freitag und Samstag klicken.
ECRD 2016 ist einzigartig, da sie die gesamte Gemeinschaft von Patienten mit seltenen Krankheiten (Patienten, Patientenvertreter, Akademiker Beschäftigte des Gesundheitswesens, Vertreter der Industrie, Zahlungsträger, Regulierungsbehörden und politische Entscheidungsträger) über alle seltenen Krankheiten und Ländergrenzen involviert und den Wissensaustausch zwischen den Teilnehmern aus ganz Europa und der Welt unterstützt.
Dank des transformativen Charakters der Ergebnisse der ECRD 2016 können sie unterstützend in die EU-Politik, die Expertengruppe der Europäischen Kommission für seltene Krankheiten, das EU-Joint-Action-Programm über seltene Krankheiten 'RD-Action', das EU-Gesundheitsprogramm und das EU-Rahmenprogramm für Forschung und Innovation 'Horizon 2020‘ einfließen.
Merken Sie sich den Termin für die nächste ECRD, 10. – 12. Mai 2018 in Wien, Österreich!

Eva Bearryman, Junior Communications Manager, EURORDIS
Übersetzer: Peggy Strachan
Page created: 27/07/2016
Page last updated: 27/07/2016

Changer la donne pour les maladies rares à l’ECRD 2016

Changer la donne pour les maladies rares à l’ECRD 2016

Eurordis, Rare Diseases Europe

La voix des patients atteints
de maladies rares en Europe

Langues





Changer la donne pour les maladies rares à l’ECRD 2016

Panel Jeunes à l’ECRD 2016


La 8e édition de la Conférence européenne sur les maladies rares et les produits orphelins (ECRD 2016) a rassemblé plus de 750 participants en provenance d’une cinquantaine de pays, à Édimbourg, en Écosse (Royaume-Uni).
Plus de 120 présidents de séance, intervenants et participants se sont penchés sur le thème « Changer la donne pour le traitement des maladies rares » et ont débattu des politiques et des initiatives susceptibles de bouleverser la donne dans les domaines suivants :recherche, diagnostic, développement et autorisation des médicaments, accès à ceux-ci, prise en charge des patients, politique sociale, société en général.
Consultez le compte rendu de l’ECRD 2016, qui, pour chaque thème, met en évidence les facteurs de changement identifiés, mais aussi les photos de la conférence et plus de 200 posters.
Les vidéos des séances inaugurale, plénières et de clôture sont également disponibles. Citons notamment les allocutions de :
Pour consulter les différentes interventions, cliquez sur les liens associés aux noms des orateurs dans le menu déroulant par thèmes de l’ordre du jour de vendredi et de samedi.
L’ECRD a ceci d’unique qu’elle implique l’ensemble de la communauté des maladies rares, représentants de patients, monde académique, professionnels de santé, industrie, organismes payeurs, organismes de réglementation et décideurs. Abordant toutes les maladies rares et faisant fi des frontières, elle encourage le partage des connaissances entre les participants venus de toute l’Europe, mais aussi du reste du monde.
À vos agendas : la prochaine ECRD se tiendra du 10 au 12 mai 2018, à Vienne (Autriche) !

Eva Bearryman, Junior Communications Manager, EURORDIS
Traducteur : Trado Verso
Page created: 27/07/2016
Page last updated: 27/07/2016

Rare disease game changers at ECRD 2016

Rare disease game changers at ECRD 2016

Eurordis, Rare Diseases Europe

The Voice of Rare Disease
Patients in Europe



Languages





Rare disease game changers at ECRD 2016

The youth panel at ECRD 2016



The 8th edition of the European Conference on Rare Diseases & Orphan Products (ECRD 2016) brought together over 750 attendees from nearly 50 countriesin Edinburgh, Scotland, UK.
Over 120 session chairs, speakers and panelists led discussions on the theme of game changers in rare diseases and exchanged on game-changing policies and initiatives in research, diagnosis, drug development, authorisation and access, care provisionsocial policy and global society.
See the ECRD 2016 Executive Summary including the game changers identified in the conclusions of each theme, the ECRD 2016 conference photos and the 200+ posters.
Videos of the opening, plenary and closing plenary sessions, are also available, including: 
  • A keynote address from Maureen Watt, Minister for Mental Health, Scottish Government, whose much tweeted quote on rare disease patients set the tone of the conference, “It's not just ‘What's the matter with you?’ but ‘What matters to you?’ ”.
  • Igor Ban, rare cancer survivor and RareConnect Web Content Manager, who gave a moving account of the war that his family fought against his acute lymphoblastic leukemia.
  • keynote from Professor Tom Shakespeare from Norwich Medical School, UK, who spoke on the medicalisation of disability and said, “Human beings come in different shapes and sizes, we need to change the world to accept that fact, not change us to fit into the world”.
  • Alastair Kent, Director of Genetic Alliance UK, who said, “As patients and families we are part of the solution and we demand to have our voice heard”.
  • An inspiring youth advocates panel in which 6 youth panelists talked about their personal rare disease stories and also discussed the importance of social media in connecting the rare disease community.
  • A speech from Xavier Prats Monné, Director General of the Directorate-General for Health & Food Safety, European Commission, who said, “Our priority is and will continue to be supporting rare diseases and European Reference Networks”.
All conference speaker presentations are available by clicking on the links in speakers’ names in the theme dropdown menus on Friday’s agenda and Saturday’s agenda.
ECRD 2016 is unique in involving the entire rare disease community (patient representatives, academics, healthcare professionals, industry, payers, regulators and policy makers) across all rare diseases and borders, and encourages knowledge sharing between participants from countries all over Europe and the world.
The transformational nature of the outcomes from ECRD 2016 will be to help inform EU policies, theCommission Expert Group on Rare Diseases, the EU Joint Action on Rare Diseases 'RD-Action', the EU Health Programme and the EU Framework Programme for Research and Innovation 'Horizon 2020'.
Save the date for the next ECRD, 10 – 12 May 2018 in Vienna, Austria!

Eva Bearryman, Junior Communications Manager, EURORDIS
Page created: 27/07/2016
Page last updated: 27/07/2016

MercatorNet: Why can’t academics say what they mean, instead of using gobbledegook?

MercatorNet: Why can’t academics say what they mean, instead of using gobbledegook?



Why can’t academics say what they mean, instead of using gobbledegook?

Twenty years after a famous hoax, has anything changed?
Siobhan Lyons | Jul 27 2016 | comment 3 
    




Language disguises the thought; so that from the external form of the clothes one cannot infer the form of the thought they clothe, because the external form of the clothes is constructed with quite another object than to let the form of the body be recognized.
The above is an excerpt from philosopher Ludwig Wittgenstein’s magnum opus, suitably titled: Tractatus Logico-Philosophicus. Wittgenstein puts forth the fairly simple idea that the clarity of a thought or argument depends on the language we use. What’s ironic about the paragraph is that the thought behind the language is considerably simpler than the language used to express the thought.

This, in short, is what is wrong with academic writing. Many academics still operate under the flawed logic that good writing must be complex writing (or vice versa).

The Sokal Affair  

This very theory was put to the test twenty years ago, when mathematics professorAlan Sokal sent in a purposefully incomprehensible article to the journal Social Text. His aim was to see whether the journal would “publish an article liberally salted with nonsense if (a) it sounded good and (b) it flattered the editors’ ideological preconceptions.”

The article, titled Transgressing the Boundaries: Towards a Transformative Hermeneutics of Quantum Gravity, was indeed published in the spring/summer 1996 issue of Social Text. In the article, Sokal argued that quantum gravity and physical reality are social and linguistic concepts. One of the quotes from the article reads:

In this way the infinite-dimensional invariance group erodes the distinction between observer and observed; the [pi] of Euclid and the G of Newton, formerly thought to be constant and universal, are now perceived in their ineluctable historicity; and the putative observer becomes fatally de-centered, disconnected from any epistemic link to a space-time point that can no longer be defined by geometry alone.
Once it was published, Sokal revealed that the entire article was in fact a hoax. He called his paper “a pastiche of left-wing cant, fawning references, grandiose quotations, and outright nonsense … structured around the silliest quotations”.

Similar hoaxes have been performed throughout the years, and the Sokal Hoax was used as the basis of an experiment by sociologist Robb Willer at Stanford University. Willer got his students to read Sokal’s paper, telling them that it was either a paper written by another student or an eminent scholar. Willer found that the students who believed the paper was written by a renowned scholar rated it higher than those believing it was written by another student.

‘Explosion in a dictionary factory’     

Postcolonial theorist Edward Said, whose own work has often been criticised as deliberately obscure, once said that “at some point critics and writers become parodies of themselves.”

From 1995 to 1998, The Philosophy and Literature Bad Writing Award – much like the Bad Sex in Fiction Award but far less popular on a broad scale – was given to writers and academics whose work proved purposefully dense. One of the more notable winners was gender studies theorist Judith Butler, whose work, according to academic David Gauntlett, is like an explosion in a dictionary factory.

One single sentence from Butler’s work Further Reflections on the Conversations of Our Time was enough to make her the winner of the 1998 award:

The move from a structuralist account in which capital is understood to structure social relations in relatively homologous ways to a view of hegemony in which power relations are subject to repetition, convergence, and rearticulation brought the question of temporality into the thinking of structure, and marked a shift from a form of Althusserian theory that takes structural totalities as theoretical objects to one in which the insights into the contingent possibility of structure inaugurate a renewed conception of hegemony as bound up with the contingent sites and strategies of the rearticulation of power.
Of this sentence, the late philosopher Dennis Dutton remarked that “it’s possibly the anxiety-inducing obscurity of such writing that has led Professor Warren Hedges of Southern Oregon University to praise Judith Butler as ‘probably one of the ten smartest people on the planet’”.

The complex work of academics and their unwillingness to write for a more lay audience is unsurprising to some commentators. Journalist Nicholas Kristof of The New York Times writes that the academic industry “glorifies arcane unintelligibility while disdaining impact and audience”, while philosophy professor Terrance Macmullan argues that “most intellectuals simply don’t bother trying to engage the public.”

Of course, not all academic work is designed to be written for a general audience, which is why academia is distinguished from other kinds of writing, such as journalism. Each industry has its own specific lingo, from medicine to law, complete with its own buzz words and terminology.

When the idea in question is relatively straightforward, however, there is no reason why clear communication can’t be used over jargon. As Gauntlett writes about Judith Butler, “if one takes the time to dig through the rubble, one finds that her ideas are actually quite straight-forward.”

Academia today    

It’s been twenty years since the Sokal Affair, but has academic writing progressed? That is, are academics any better at communicating to a wider audience, or to each other?

While some academics strive to keep academia a gated community, others, such as former academic Annetta Cheek, have developed initiatives to promote better communication. Cheek is the co-founder of the US non-profit Centre for Plain Language, which championed the 2010 Plain Writing Act, making it legally necessary for US government agencies to communicate clearly.

Writer Victoria Clayton notes that academics are now more willing to “call their colleagues out for being habitual offenders of opaque writing.” However, she concedes that “the battle to make clear and elegant prose the new status quo is far from won.”

For instance, the UTS Library Academic Writing Guide, released in February 2013, provides a checklist of requirements for academic writing. According to the guide, academic writing must be linear, informative, accurate, and complex, with essays “written using more complex grammar, vocabulary, and structures.”

It advises academics that:

Instead of two short sentences, use more complex sentence structures.
The demand to be deliberately complex is sutured into the very fabric of academic life. But complexity shouldn’t be confused for intellect. Writing in a more straight-forward way does not necessarily mean compromising on quality; as George Orwell outlined in his essay Politics and the English Language: “Never use a foreign phrase, a scientific word, or a jargon word if you can think of an everyday English equivalent.”

While academia is indeed a specialist area like any other, ideas that are of importance to society at large – gender, race, equality, health, democracy – deserve to be discussed in a coherent manner.

Siobhan Lyons is a Tutor in Media and Cultural Studies at Macquarie University, in Sydney. This article was originally published on The Conversation. Read the original article.




MercatorNet



Yesterday I wrote an article arguing that Christians should not be afraid to convert Muslims in Western societies. Today Chiara Bertoglio (below) mourns the death of a humble 85-year-old parish priest in France, murdered at the hands of ISIS terrorists. And today, as if on cue, an editorial writer for the Wall Street Journal with a Muslim background, Sohrab Ahmari, tweeted that he was becoming a Catholic. Interesting. 
Also in this issue, Zac Alstin analyses Donald Trump as an example of a choleric temperament, a psychological classification invented by the ancient Greeks. AndSiobhan Lyons explains why academic writing so often appears to be sheer gobbledegook. 




Michael Cook 

Editor 

MERCATORNET



The ancient Greeks knew what makes Donald Trump tick

Zac Alstin | FEATURES | 27 July 2016
Introducing the perfectly choleric man

Read more...
Murder in the parish church

Chiara Bertoglio | ABOVE | 27 July 2016
A simple French priest died this week at the hands of Muslim fanatics

Read more...
Why can’t academics say what they mean, instead of using gobbledegook?

Siobhan Lyons | FEATURES | 27 July 2016
Twenty years after a famous hoax, has anything changed?

Read more...
MERCATORNET | New Media Foundation 

Suite 12A, Level 2, 5 George Street, North Strathfied NSW 2137, Australia 



Designed by elleston



New Media Foundation | Suite 12A, Level 2, 5 George St | North Strathfield NSW 2137 | AUSTRALIA | +61 2 8005 8605



MercatorNet
I was about to post out the newsletter when news came through of a fresh atrocity by foot soldiers for ISIS in France. An 83-year-old Catholic priest was celebrating morning Mass in a town outside Rouen when two men with knives burst in, took several hostages and slit the throat of the priest. The terrorists were shot dead by police.
How are we supposed to react to such appalling and irrational violence? I've offered one long-term solution in my article below: convert the Muslims. 
Michael Cook

Editor

MERCATORNET
Why aren’t more Muslims converting to Christianity?

Michael Cook | ABOVE | 26 July 2016
Why aren't more Muslims converting to Christianity?

Read more...
Forget the false martyrs of terror. Honour the true martyrs of courage

Monica Doumit | ABOVE | 26 July 2016
Amidst the mayhem of Islamic terrorism, selfless virtue shines out

Read more...
How Pokemon Go distracts players from the natural world

Falko Buschke | CONNECTING | 26 July 2016
Is the craze replacing, rather than enhancing, a love for the outdoors?

Read more...
MERCATORNET | New Media Foundation

Suite 12A, Level 2, 5 George Street, North Strathfied NSW 2137, Australia



Designed by elleston


New Media Foundation | Suite 12A, Level 2, 5 George St | North Strathfield NSW 2137 | AUSTRALIA | +61 2 8005 8605