Bringing innovation to rare disease patients in Europe

Why is Biogen focusing on rare diseases?  About 6,000 different rare diseases have been identified to date and these are estimated to affect 30 million people across Europe. It is essential that we collaborate across the medical community, industry, and governments to develop new therapies, explore new technologies and ensure equitable access to treatment. We must innovate across every aspect of treatment to transform the lives of people in these underserved communities.  At Biogen, we have shown that pioneering in neuroscience can change the course of treatment for certain rare diseases. We have transformed the treatment of Spinal Muscular Atrophy (SMA), a rare neurodegenerative disease which is one of the leading genetic causes of infant mortality in Europe. Since 2016, we have helped more than 10,000 SMA patients live longer, fuller and better lives. Today, infants born with SMA have a chance to walk, run, play and go to school.  There is still so much more work to be done and our commitment drives us to continue researching, investing and innovating to find new ways to improve the lives of those living with SMA and other rare diseases. Few companies are pursuing disease modifying treatments in as many difficult areas as Biogen is. We are currently developing a range of potential therapies for rare diseases, including Choroideremia, a genetic retinal disorder and major cause of blindness, and Amyotrophic Lateral Sclerosis (ALS), a rare terminal neurodegenera...
Source: EyeForPharma - Category: Pharmaceuticals Authors: Source Type: news

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The objective of this theoretical paper is to discuss the use of implementation science theories, models, and frameworks to inform and evaluate the integration of the electronic collection of PREMs (ePREMs) in healthcare quality improvement for primary care in Canada.MethodsTo assess potential knowledge-to-practice gaps in implementing ePREMs in primary care in Alberta, the overarching implementation model that will be used is the Knowledge to Action Cycle. An integrated knowledge translation approach will ensure ongoing engagement of key stakeholders (e.g. primary care providers, patients) throughout the study. ePREM impl...
Source: Quality of Life Research - Category: Health Management Source Type: research
ConclusionMultilevel IS frameworks are necessary for PROM/PREM implementation given the complexity. In cross-study comparisons, barriers to PROM/PREM implementation were consistent across patient populations and care settings, but enablers were context specific, suggesting the need for tailored implementation strategies based on clinic resources. Theoretically guided studies are needed to clarify how, why, and in what circumstances IS principles lead to successful PROM/PREM integration and sustainability.
Source: Quality of Life Research - Category: Health Management Source Type: research
ConclusionThis study was the preparatory phase for a future trial on a method to stimulate setting specific goals. The future trial would provide a thorough understanding of the quality of person-defined goals.
Source: Quality of Life Research - Category: Health Management Source Type: research
COVID-19 deaths per day have begun to creep back up again after a decline that started in late September.Associated Press
Source: Medscape Internal Medicine Headlines - Category: Internal Medicine Tags: Infectious Diseases News Source Type: news
Commenting on the announcement that the government is to end the public sector pay freeze UNISON general secretary Christina McAnea said: “There’s never a good time to freeze public sector pay. Doing so at the peak of a pandemic was the height of folly. “Staff were doing their all to keep under-pressure services running, and ministers looked like they didn’t care. “There can be no decent public services without the people to run them. Pay freezes don’t help employers hold on to experienced staff, nor attract new recruits. “But if the chancellor doesn’t allocate...
Source: UNISON Health care news - Category: UK Health Authors: Tags: News Press release pay freeze Source Type: news
Oct 27, 2021. . Sponsored by Center for Homeland Defense and Security
Source: Rural events via the Rural Assistance Center - Category: Rural Health Source Type: events
This study aims to examine the consequent changes in medical school curricula alongside students’ mental and physical health. It is observed that 549 medical students (response rate: 79.7%) from 31 of 37 public medical schools in Germany completed a cross-sectional online survey. Students answered questions regarding teaching, internet use, COVID-19 and well-being. A multivariate logistic regression examined factors associated with depressed mood, insomnia and headache. Academic teaching moved to a virtual environment (91%), whilst practical activities were suspended or cancelled (88%). Virtual teaching modalit...
Source: The Journal of Mental Health Training, Education and Practice - Category: Psychiatry & Psychology Authors: Source Type: research
Wichita State University is one of the latest in Wichita to announce a new Covid-19 vaccine requirement for all of its employees based on a federal mandate from President Joe Biden. In an email sent to faculty and staff on Friday, WSU announced it will require all employees — including full- and part-time workers, as well as student employees — to be fully vaccinated by Dec. 8, regardless of whether or not they work on campus or remotely. WSU employs about 2,500 employee s. "Vaccination of…
Source: bizjournals.com Health Care:Pharmaceuticals headlines - Category: Pharmaceuticals Authors: Source Type: news
Philippe Gabriel Steg, MD, discusses a recent review of central retinal artery occlusion for cardiologists who may not be familiar with the condition.theheart.org on Medscape
Source: Medscape Ophthalmology Headlines - Category: Opthalmology Tags: Cardiology Viewpoint Source Type: news
Wichita State University is one of the latest in Wichita to announce a new Covid-19 vaccine requirement for all of its employees based on a federal mandate from President Joe Biden. In an email sent to faculty and staff on Friday, WSU announced it will require all employees — including full- and part-time workers, as well as student employees — to be fully vaccinated by Dec. 8, regardless of whether or not they work on campus or remotely. WSU employs about 2,500 employee s. "Vaccination of…
Source: bizjournals.com Health Care:Biotechnology headlines - Category: Biotechnology Authors: Source Type: news
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