|By PR Newswire||
|February 28, 2014 01:00 AM EST||
MUTTENZ, Switzerland, February 28, 2014 /PRNewswire/ --
To mark international Rare Disease Day, InterMune today announces its support for the development of a European Patient Charter for people with idiopathic pulmonary fibrosis (IPF).
IPF is an irreversible, progressive and ultimately fatal fibrotic interstitial lung disease[i],[ii]. IPF has a projected survival rate of only 20-40% after five years,[i],[ii] making it more rapidly lethal than many cancers [iii],[iv]. The disease causes scarring of the lungs, irreversibly destroying normal lung architecture and hindering a person's ability to breathe.
The Charter will see, for the first time, patient advocacy groups and healthcare professionals come together at a European level to campaign for more standardized care and equal access to diagnosis, treatment and after care options for those with IPF in Europe.
Advocacy groups and healthcare professionals from a number of European countries will meet in Brussels on March 8 this year to identify and agree the key priorities for IPF patients. The Charter will then form a central part of efforts to raise awareness of these issues and to bring them to the attention of national and European policy makers.
The Charter will be launched via an online public petition and a lunch event at the EU Parliament later this year.
Commenting on the initiative, Cristina Coteanu, the lead candidate for the Fédéralistes Démocrates Francophones in Belgium and a key supporter of the initiative, said:
"Despite its devastating impact on patients, IPF has not received the attention it deserves in Europe. This initiative is an important step forward in raising awareness of the condition and for galvanizing national and European policy makers into taking action to address inequalities in care and treatment. I look forward to supporting the Charter when it has been developed, and to securing the backing of colleagues from across the political spectrum."
Lida Naber of the Dutch Pulmonary Fibrosis Society (Longfibrose NL) added:
"We strongly believe that all pulmonary fibrosis patients throughout Europe should receive the best available treatment and support, alongside appropriate reimbursement. It is important for the IPF community to speak with one voice and we are looking forward to campaigning with our colleagues to push treatment and care up the agenda and to address unacceptable inequalities in care."
Giacomo di Nepi, General Manager of InterMune Europe stated:
"InterMune is dedicated to IPF research and the development of treatments for this irreversible disease. We are pleased to play our part in supporting the Charter initiative, which will be essential for improving care and access to healthcare services. The development of a Charter provides clinicians, patient advocacy groups and patients the opportunity of working together to identify the key concerns that can and must be addressed by policy makers."
InterMune is proud to support European patient associations in their commitment to develop an IPF Charter that will benefit IPF patients. InterMune has contributed financially to the organization of the first meeting in Brussels.
IPF is an irreversible, progressive and ultimately fatal fibrotic interstitial lung disease which inevitably leads to worsening lung function and exercise tolerance, and shortness of breath. Every IPF patient follows a different and unpredictable course and it is not possible to predict if a patient will progress slowly or rapidly, or when the rate of decline may change. Periods of transient clinical stability in IPF, should they occur, inevitably give way to continued disease progression. The median survival time from diagnosis is two to five years,[i],[ii]with a five-year survival rate of approximately 20-40 percent [i],[ii] which makes IPF more rapidly lethal than many cancers, including breast, ovarian and colorectal [iii],[iv]. IPF typically occurs in patients over the age of 45, and is more common in men than in women.[iii]
InterMune is a biotechnology company focused on the research, development and commercialization of innovative therapies in pulmonology and orphan fibrotic diseases. In pulmonology, we are focused on therapies for the treatment of idiopathic pulmonary fibrosis (IPF), a progressive and fatal lung disease. Pirfenidone, the only medicine approved for IPF anywhere in the world, is marketed by InterMune in the EU and Canada as Esbriet® and is currently in a Phase 3 clinical trial to support regulatory registration in the United States. InterMune's research programs are focused on the discovery of targeted, small-molecule therapeutics and biomarkers to treat and monitor serious pulmonary and fibrotic diseases. For additional information about InterMune and its R&D pipeline, please visit http://www.intermune.com.
Notes to Editors
For further information, please contact:
- Owen Bethell, Senior Account Director, Weber Shandwick, +41(0)22-879-85-11 [email protected]
- Manuela Maronati, Senior Vice President Sales, Marketing and Advocacy, Europe, InterMune International AG, +41-61-466-80-41 / [email protected]
i. American Thoracic Society/European Respiratory Society. Am J Respir Crit Care Med 2002;165:277(304.
ii. Bjoraker JA, Ryu JH, Edwin MK, Myers JL, Tazelaar HD, Schroeder DR, Offord KP: Prognostic significance of histopathologic subsets in idiopathic pulmonary fibrosis. Am J Respir Crit Care Med 1998, 157: 199-203.
iii. Raghu G et al. Incidence and prevalence of idiopathic pulmonary fibrosis. Am J Respir Crit Care Med 2006; 174: 810-16.
Raghu G et al. Am J Respir Crit Care Med 2011;183:788(824
iv. Cancer Facts and Figures 2009, American Cancer Society. PAH data source: Hamilton, N. and Elliot C. 13.
I wanted to gather all of my Internet of Things (IOT) blogs into a single blog (that I could later use with my University of San Francisco (USF) Big Data “MBA” course). However as I started to pull these blogs together, I realized that my IOT discussion lacked a vision; it lacked an end point towards which an organization could drive their IOT envisioning, proof of value, app dev, data engineering and data science efforts. And I think that the IOT end point is really quite simple…
Jul. 27, 2016 06:45 PM EDT Reads: 1,135
"There's a growing demand from users for things to be faster. When you think about all the transactions or interactions users will have with your product and everything that is between those transactions and interactions - what drives us at Catchpoint Systems is the idea to measure that and to analyze it," explained Leo Vasiliou, Director of Web Performance Engineering at Catchpoint Systems, in this SYS-CON.tv interview at 18th Cloud Expo, held June 7-9, 2016, at the Javits Center in New York Ci...
Jul. 27, 2016 06:45 PM EDT Reads: 2,047
As companies gain momentum, the need to maintain high quality products can outstrip their development team’s bandwidth for QA. Building out a large QA team (whether in-house or outsourced) can slow down development and significantly increases costs. This eBook takes QA profiles from 5 companies who successfully scaled up production without building a large QA team and includes: What to consider when choosing CI/CD tools How culture and communication can make or break implementation
Jul. 27, 2016 06:00 PM EDT Reads: 1,668
Actian Corporation has announced the latest version of the Actian Vector in Hadoop (VectorH) database, generally available at the end of July. VectorH is based on the same query engine that powers Actian Vector, which recently doubled the TPC-H benchmark record for non-clustered systems at the 3000GB scale factor (see tpc.org/3323). The ability to easily ingest information from different data sources and rapidly develop queries to make better business decisions is becoming increasingly importan...
Jul. 27, 2016 05:45 PM EDT Reads: 854
Big Data, cloud, analytics, contextual information, wearable tech, sensors, mobility, and WebRTC: together, these advances have created a perfect storm of technologies that are disrupting and transforming classic communications models and ecosystems. In his session at @ThingsExpo, Erik Perotti, Senior Manager of New Ventures on Plantronics’ Innovation team, provided an overview of this technological shift, including associated business and consumer communications impacts, and opportunities it ...
Jul. 27, 2016 04:30 PM EDT Reads: 184
Redis is not only the fastest database, but it is the most popular among the new wave of databases running in containers. Redis speeds up just about every data interaction between your users or operational systems. In his session at 19th Cloud Expo, Dave Nielsen, Developer Advocate, Redis Labs, will share the functions and data structures used to solve everyday use cases that are driving Redis' popularity.
Jul. 27, 2016 04:30 PM EDT Reads: 1,614
A critical component of any IoT project is what to do with all the data being generated. This data needs to be captured, processed, structured, and stored in a way to facilitate different kinds of queries. Traditional data warehouse and analytical systems are mature technologies that can be used to handle certain kinds of queries, but they are not always well suited to many problems, particularly when there is a need for real-time insights.
Jul. 27, 2016 04:30 PM EDT Reads: 1,850
To leverage Continuous Delivery, enterprises must consider impacts that span functional silos, as well as applications that touch older, slower moving components. Managing the many dependencies can cause slowdowns. See how to achieve continuous delivery in the enterprise.
Jul. 27, 2016 04:18 PM EDT Reads: 197
You think you know what’s in your data. But do you? Most organizations are now aware of the business intelligence represented by their data. Data science stands to take this to a level you never thought of – literally. The techniques of data science, when used with the capabilities of Big Data technologies, can make connections you had not yet imagined, helping you discover new insights and ask new questions of your data. In his session at @ThingsExpo, Sarbjit Sarkaria, data science team lead ...
Jul. 27, 2016 04:15 PM EDT Reads: 1,121
Is your aging software platform suffering from technical debt while the market changes and demands new solutions at a faster clip? It’s a bold move, but you might consider walking away from your core platform and starting fresh. ReadyTalk did exactly that. In his General Session at 19th Cloud Expo, Michael Chambliss, Head of Engineering at ReadyTalk, will discuss why and how ReadyTalk diverted from healthy revenue and over a decade of audio conferencing product development to start an innovati...
Jul. 27, 2016 04:00 PM EDT Reads: 1,051
"Software-defined storage is a big problem in this industry because so many people have different definitions as they see fit to use it," stated Peter McCallum, VP of Datacenter Solutions at FalconStor Software, in this SYS-CON.tv interview at 18th Cloud Expo, held June 7-9, 2016, at the Javits Center in New York City, NY.
Jul. 27, 2016 04:00 PM EDT Reads: 1,517
Extracting business value from Internet of Things (IoT) data doesn’t happen overnight. There are several requirements that must be satisfied, including IoT device enablement, data analysis, real-time detection of complex events and automated orchestration of actions. Unfortunately, too many companies fall short in achieving their business goals by implementing incomplete solutions or not focusing on tangible use cases. In his general session at @ThingsExpo, Dave McCarthy, Director of Products...
Jul. 27, 2016 04:00 PM EDT Reads: 1,735
WebRTC is bringing significant change to the communications landscape that will bridge the worlds of web and telephony, making the Internet the new standard for communications. Cloud9 took the road less traveled and used WebRTC to create a downloadable enterprise-grade communications platform that is changing the communication dynamic in the financial sector. In his session at @ThingsExpo, Leo Papadopoulos, CTO of Cloud9, discussed the importance of WebRTC and how it enables companies to focus...
Jul. 27, 2016 03:30 PM EDT Reads: 971
StackIQ has announced the release of Stacki 3.2. Stacki is an easy-to-use Linux server provisioning tool. Stacki 3.2 delivers new capabilities that simplify the automation and integration of site-specific requirements. StackIQ is the commercial entity behind this open source bare metal provisioning tool. Since the release of Stacki in June of 2015, the Stacki core team has been focused on making the Community Edition meet the needs of members of the community, adding features and value, while ...
Jul. 27, 2016 01:45 PM EDT Reads: 438
Deploying applications in hybrid cloud environments is hard work. Your team spends most of the time maintaining your infrastructure, configuring dev/test and production environments, and deploying applications across environments – which can be both time consuming and error prone. But what if you could automate provisioning and deployment to deliver error free environments faster? What could you do with your free time?
Jul. 27, 2016 01:30 PM EDT Reads: 272