|By PR Newswire||
|February 14, 2014 05:05 AM EST||
CHICAGO, Feb. 14, 2014 /PRNewswire-USNewswire/ -- Diagnosis is one of the most challenging problems faced by rare disease patients and caregivers. The Shire Rare Disease Impact Report found that it takes an average of 7.6 years for rare disease patients in the US to receive a proper diagnosis, with 2-3 misdiagnoses along the way. One reason is that, according to National Institutes of Health (NIH) estimates, only 500 of the 7,000 rare diseases are likely to be in a physician's repertoire for diagnosis.
Author and geneticist Sharon Moalem, MD, PhD will be part of an unprecedented collaboration to create an open source solution that will help doctors save lives at Healthcare's Grand HackFest with [email protected] Medicine at MIT on March 14-16. The hackathon is the final push that will follow more than seven years of research and investments by Dr. Moalem to develop an inexpensive facial recognition tool for genetic and congenital disorders by leveraging technology developed for the security industry. This disruptive technology may provide a way to help physicians screen for rare genetic conditions that would otherwise be missed.
"Right now the tool does only relative facial comparisons," Moalem explains. "I know it can do so much more and this hackathon will be what we need to take it to the next level—and ideally, arm doctors with crucial knowledge to help patients."
The hackathon is scheduled for March 14-16 at the Massachusetts Institute of Technology (MIT) campus in Cambridge, Massachusetts. Staged by MIT and the Kauffman Foundation, the event brings together teams of engineers, entrepreneurs, designers, patients, and healthcare professionals to develop creative solutions and innovative breakthroughs in various tracks over the course of one weekend.
"The goal is to create an environment with enough support where these teams (usually pitched by clinicians) can really dive deep into the problems in healthcare, be matched with the right innovative people who provide solutions, and then work on the solution enough to have a product to demo at the end," explains Andrea Ippolito, co-leader of MIT [email protected] Medicine.
The rare disease track of the hackathon emerged from a collaboration between Dr. Moalem and Wendy White, a rare disease caregiver and founder of Siren Interactive, a relationship marketing agency specializing in orphan drugs and rare diseases. They are partnering with the Global Genes Project, a leading rare disease patient advocacy organization, which will provide the resulting Recognyz software application to healthcare professionals.
According to White, "It's not realistic to expect physicians to be highly educated about 7000 different diseases–most of which they will never see in their practice. I can tell you as a rare disease caregiver that leveraging technology in this way will be a huge leap forward in getting a timely and accurate diagnosis and, for some patients, more effective treatment."
Cross-functional teams will compete over the course of 3 days to refine Moalem's rare disease diagnosis software and the winning team will receive funding for their approach. Moalem is donating his Recognyz patents to Global Genes so the tool can be offered free of charge to physicians.
"We are honored to be a strategic partner in this opportunity to offer a potentially game changing new tool to physicians," commented Nicole Boice, president and founder of Global Genes. "Providing it at little or no cost for greater adoption and increased patient access is even more appealing."
For information about the rare disease hackathon, contact: Ayesha N. Khalid, MD, 1-503-789-2203.
For more facts on rare disease diagnosis, view and share Siren's infographic, Journey into the Unknown, The Search for a Rare Diagnosis.
About Sharon Moalem, MD, PhD
Sharon Moalem MD, PhD, is a physician, scientist, and inventor. He has been researching rare disorders for the last 15 years working to find novel treatments for orphan diseases. Dr. Moalem is also a NYT bestselling author and his highly anticipated third book, Inheritance: How Our Genes Change Our Lives, and Our Lives Change Our Genes, demonstrates what rare genetic conditions can teach us about our health and wellbeing.
He is also the founder of two biotechnology companies and is the recipient of 20 patents for his inventions in biotechnology and human health. Dr. Moalem's scientific work, based upon using rare conditions as a template to understand more common conditions led to the discovery of Siderocillin, a new antibiotic that specifically targets so called 'superbugs' or multiresistant microbes that have increasingly become a serious threat to our health.
His current invention, a mobile application called Recogynz, was developed to provide an accessible tool to assist healthcare practitioners in the identification of facial features that are associated with rare disorders. The desire to create a mobile medical application, that could help in the detection of rare disorders, was rooted in the desire to reduce the time to diagnosis and in so doing improve health outcomes.
About Siren Interactive
Siren Interactive is a rare disease relationship marketing agency with unmatched expertise in addressing the challenges and unmet needs of patients, caregivers, and physicians dealing with rare disorders. For more than 14 years, across more than 30 different disease states, we've had 1 focus: Finding rare disease patients and connecting them to our clients' brands. As trailblazers in recognizing that patient-driven decision making is central to successful orphan drug commercialization, we are constantly innovating to meet patients and caregivers where they live. To learn more about our proprietary approaches to building trust relationships with rare disease stakeholders visit www.sireninteractive.com.
About Global Genes
Global Genes is a leading rare and genetic disease patient advocacy organization.The organization's mission is to 'Eliminate the Challenges of Rare Disease' by equipping patients to become successful advocates, and through education and empowerment, become 'activists' for their disease. Global Genes does this through a growing portfolio of educational tools and resources, events, building out critical connections and funding innovations in science and technology that will impact patients within their lifetime. Recognized worldwide by the Blue Denim Genes Ribbon™, Global Genes unites experts, advocates and patients of all ages to stand together in hope for treatments and cures for the estimated 7,000 rare and genetic diseases that impact approximately 30 million Americans and over 250 million people worldwide. For more information about Global Genes™, please visit the following links:
Twitter: @GlobalGenes - https://twitter.com/GlobalGenes
About MIT [email protected] Medicine
Mentored by Entrepreneur in Residence and Senior Faculty member Zen Chu, PhD, Massachusetts Institute of Technology (MIT) [email protected] Medicine's mission is to create an ecosystem at MIT, hosting the Boston medical community and beyond to teach engineers, entrepreneurs, clinicians, and designers the skills necessary to launch disruptive healthcare businesses. Healthcare needs Hackers—clever innovators to re-architect healthcare systems and create new products and services to impact cost and quality. Some areas of healthcare are not hackable and must prove efficacy down a traditional plodding path. However, health professionals and engineers can accelerate medical innovation across many diseases and institutions by applying techniques from high technology to healthcare. Borrowing philosophies from Silicon Valley and MIT for rapid product design, lean startup methodologies, workflow re-engineering, novel data collection, big data analysis, and info publishing can have powerful effects in healthcare.
SOURCE Global Genes
The best way to leverage your Cloud Expo presence as a sponsor and exhibitor is to plan your news announcements around our events. The press covering Cloud Expo and @ThingsExpo will have access to these releases and will amplify your news announcements. More than two dozen Cloud companies either set deals at our shows or have announced their mergers and acquisitions at Cloud Expo. Product announcements during our show provide your company with the most reach through our targeted audiences.
Oct. 24, 2016 09:15 AM EDT Reads: 4,657
Fact is, enterprises have significant legacy voice infrastructure that’s costly to replace with pure IP solutions. How can we bring this analog infrastructure into our shiny new cloud applications? There are proven methods to bind both legacy voice applications and traditional PSTN audio into cloud-based applications and services at a carrier scale. Some of the most successful implementations leverage WebRTC, WebSockets, SIP and other open source technologies. In his session at @ThingsExpo, Da...
Oct. 24, 2016 09:00 AM EDT Reads: 2,306
Fifty billion connected devices and still no winning protocols standards. HTTP, WebSockets, MQTT, and CoAP seem to be leading in the IoT protocol race at the moment but many more protocols are getting introduced on a regular basis. Each protocol has its pros and cons depending on the nature of the communications. Does there really need to be only one protocol to rule them all? Of course not. In his session at @ThingsExpo, Chris Matthieu, co-founder and CTO of Octoblu, walk you through how Oct...
Oct. 24, 2016 08:15 AM EDT Reads: 3,142
SYS-CON Events announced today that Embotics, the cloud automation company, will exhibit at the 19th International Cloud Expo, which will take place on November 1–3, 2016, at the Santa Clara Convention Center in Santa Clara, CA. Embotics is the cloud automation company for IT organizations and service providers that need to improve provisioning or enable self-service capabilities. With a relentless focus on delivering a premier user experience and unmatched customer support, Embotics is the fas...
Oct. 24, 2016 08:00 AM EDT Reads: 844
The Internet of Things (IoT), in all its myriad manifestations, has great potential. Much of that potential comes from the evolving data management and analytic (DMA) technologies and processes that allow us to gain insight from all of the IoT data that can be generated and gathered. This potential may never be met as those data sets are tied to specific industry verticals and single markets, with no clear way to use IoT data and sensor analytics to fulfill the hype being given the IoT today.
Oct. 24, 2016 07:30 AM EDT Reads: 2,556
More and more brands have jumped on the IoT bandwagon. We have an excess of wearables – activity trackers, smartwatches, smart glasses and sneakers, and more that track seemingly endless datapoints. However, most consumers have no idea what “IoT” means. Creating more wearables that track data shouldn't be the aim of brands; delivering meaningful, tangible relevance to their users should be. We're in a period in which the IoT pendulum is still swinging. Initially, it swung toward "smart for smar...
Oct. 24, 2016 07:15 AM EDT Reads: 923
@ThingsExpo has been named the Top 5 Most Influential M2M Brand by Onalytica in the ‘Machine to Machine: Top 100 Influencers and Brands.' Onalytica analyzed the online debate on M2M by looking at over 85,000 tweets to provide the most influential individuals and brands that drive the discussion. According to Onalytica the "analysis showed a very engaged community with a lot of interactive tweets. The M2M discussion seems to be more fragmented and driven by some of the major brands present in the...
Oct. 24, 2016 05:45 AM EDT Reads: 11,379
WebRTC has had a real tough three or four years, and so have those working with it. Only a few short years ago, the development world were excited about WebRTC and proclaiming how awesome it was. You might have played with the technology a couple of years ago, only to find the extra infrastructure requirements were painful to implement and poorly documented. This probably left a bitter taste in your mouth, especially when things went wrong.
Oct. 24, 2016 05:00 AM EDT Reads: 5,539
The Quantified Economy represents the total global addressable market (TAM) for IoT that, according to a recent IDC report, will grow to an unprecedented $1.3 trillion by 2019. With this the third wave of the Internet-global proliferation of connected devices, appliances and sensors is poised to take off in 2016. In his session at @ThingsExpo, David McLauchlan, CEO and co-founder of Buddy Platform, discussed how the ability to access and analyze the massive volume of streaming data from millio...
Oct. 24, 2016 05:00 AM EDT Reads: 3,100
SYS-CON Events announced today that Pulzze Systems will exhibit at the 19th International Cloud Expo, which will take place on November 1–3, 2016, at the Santa Clara Convention Center in Santa Clara, CA. Pulzze Systems, Inc. provides infrastructure products for the Internet of Things to enable any connected device and system to carry out matched operations without programming. For more information, visit http://www.pulzzesystems.com.
Oct. 24, 2016 05:00 AM EDT Reads: 2,501
Successful digital transformation requires new organizational competencies and capabilities. Research tells us that the biggest impediment to successful transformation is human; consequently, the biggest enabler is a properly skilled and empowered workforce. In the digital age, new individual and collective competencies are required. In his session at 19th Cloud Expo, Bob Newhouse, CEO and founder of Agilitiv, will draw together recent research and lessons learned from emerging and established ...
Oct. 24, 2016 04:30 AM EDT Reads: 1,327
Enterprise IT has been in the era of Hybrid Cloud for some time now. But it seems most conversations about Hybrid are focused on integrating AWS, Microsoft Azure, or Google ECM into existing on-premises systems. Where is all the Private Cloud? What do technology providers need to do to make their offerings more compelling? How should enterprise IT executives and buyers define their focus, needs, and roadmap, and communicate that clearly to the providers?
Oct. 24, 2016 04:30 AM EDT Reads: 2,506
One of biggest questions about Big Data is “How do we harness all that information for business use quickly and effectively?” Geographic Information Systems (GIS) or spatial technology is about more than making maps, but adding critical context and meaning to data of all types, coming from all different channels – even sensors. In his session at @ThingsExpo, William (Bill) Meehan, director of utility solutions for Esri, will take a closer look at the current state of spatial technology and ar...
Oct. 24, 2016 04:00 AM EDT Reads: 1,723
SYS-CON Events announced today that Streamlyzer will exhibit at the 19th International Cloud Expo, which will take place on November 1–3, 2016, at the Santa Clara Convention Center in Santa Clara, CA. Streamlyzer is a powerful analytics for video streaming service that enables video streaming providers to monitor and analyze QoE (Quality-of-Experience) from end-user devices in real time.
Oct. 24, 2016 03:45 AM EDT Reads: 971
You have great SaaS business app ideas. You want to turn your idea quickly into a functional and engaging proof of concept. You need to be able to modify it to meet customers' needs, and you need to deliver a complete and secure SaaS application. How could you achieve all the above and yet avoid unforeseen IT requirements that add unnecessary cost and complexity? You also want your app to be responsive in any device at any time. In his session at 19th Cloud Expo, Mark Allen, General Manager of...
Oct. 24, 2016 03:45 AM EDT Reads: 899
SYS-CON Media announced today that @WebRTCSummit Blog, the largest WebRTC resource in the world, has been launched. @WebRTCSummit Blog offers top articles, news stories, and blog posts from the world's well-known experts and guarantees better exposure for its authors than any other publication. @WebRTCSummit Blog can be bookmarked ▸ Here @WebRTCSummit conference site can be bookmarked ▸ Here
Oct. 24, 2016 03:30 AM EDT Reads: 9,676
Cloud based infrastructure deployment is becoming more and more appealing to customers, from Fortune 500 companies to SMEs due to its pay-as-you-go model. Enterprise storage vendors are able to reach out to these customers by integrating in cloud based deployments; this needs adaptability and interoperability of the products confirming to cloud standards such as OpenStack, CloudStack, or Azure. As compared to off the shelf commodity storage, enterprise storages by its reliability, high-availabil...
Oct. 24, 2016 02:45 AM EDT Reads: 1,107
The IoT industry is now at a crossroads, between the fast-paced innovation of technologies and the pending mass adoption by global enterprises. The complexity of combining rapidly evolving technologies and the need to establish practices for market acceleration pose a strong challenge to global enterprises as well as IoT vendors. In his session at @ThingsExpo, Clark Smith, senior product manager for Numerex, will discuss how Numerex, as an experienced, established IoT provider, has embraced a ...
Oct. 24, 2016 02:30 AM EDT Reads: 1,076
DevOps is being widely accepted (if not fully adopted) as essential in enterprise IT. But as Enterprise DevOps gains maturity, expands scope, and increases velocity, the need for data-driven decisions across teams becomes more acute. DevOps teams in any modern business must wrangle the ‘digital exhaust’ from the delivery toolchain, "pervasive" and "cognitive" computing, APIs and services, mobile devices and applications, the Internet of Things, and now even blockchain. In this power panel at @...
Oct. 24, 2016 01:15 AM EDT Reads: 1,921
SYS-CON Events announced today that Super Micro Computer, Inc., a global leader in Embedded and IoT solutions, will exhibit at SYS-CON's 20th International Cloud Expo®, which will take place on June 7-9, 2017, at the Javits Center in New York City, NY. Supermicro (NASDAQ: SMCI), the leading innovator in high-performance, high-efficiency server technology, is a premier provider of advanced server Building Block Solutions® for Data Center, Cloud Computing, Enterprise IT, Hadoop/Big Data, HPC and ...
Oct. 24, 2016 01:00 AM EDT Reads: 3,581