Welcome!

Eclipse Authors: Cynthia Dunlop, Liz McMillan, Elizabeth White, XebiaLabs Blog, Ken Fogel

News Feed Item

Siren Interactive Brings together Global Genes, MIT, and Bestselling Author And Geneticist to Hack a Diagnosis Tool for Rare Diseases

MIT's [email protected] Medicine Program Will Deliver Technology Platform for Global Genes™ to Provide Novel Tools to Help Physicians Speed Diagnosis of Rare Disease Patients

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.

http://www.sharonmoalem.com

http://www.amazon.com/Inheritance-Genes-Change-Lives-Lives/dp/1455549444/ref=tmm_hrd_title_0?ie=UTF8&qid=1390495226&sr=1-1

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:

Web: http://globalgenes.org/

Facebook: https://www.facebook.com/globalgenesproject?ref=br_tf

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

More Stories By PR Newswire

Copyright © 2007 PR Newswire. All rights reserved. Republication or redistribution of PRNewswire content is expressly prohibited without the prior written consent of PRNewswire. PRNewswire shall not be liable for any errors or delays in the content, or for any actions taken in reliance thereon.

@ThingsExpo Stories
SYS-CON Events announced today that Bsquare has been named “Silver Sponsor” of SYS-CON's @ThingsExpo, which will take place on November 1–3, 2016, at the Santa Clara Convention Center in Santa Clara, CA. For more than two decades, Bsquare has helped its customers extract business value from a broad array of physical assets by making them intelligent, connecting them, and using the data they generate to optimize business processes.
The vision of a connected smart home is becoming reality with the application of integrated wireless technologies in devices and appliances. The use of standardized and TCP/IP networked wireless technologies in line-powered and battery operated sensors and controls has led to the adoption of radios in the 2.4GHz band, including Wi-Fi, BT/BLE and 802.15.4 applied ZigBee and Thread. This is driving the need for robust wireless coexistence for multiple radios to ensure throughput performance and th...
SYS-CON Events announced today that Commvault, a global leader in enterprise data protection and information management, has been named “Bronze Sponsor” of SYS-CON's 19th International Cloud Expo, which will take place on November 1–3, 2016, at the Santa Clara Convention Center in Santa Clara, CA. Commvault is a leading provider of data protection and information management solutions, helping companies worldwide activate their data to drive more value and business insight and to transform moder...
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.
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?
SYS-CON Events announced today that SoftLayer, an IBM Company, has been named “Gold Sponsor” of SYS-CON's 18th Cloud Expo, which will take place on June 7-9, 2016, at the Javits Center in New York, New York. SoftLayer, an IBM Company, provides cloud infrastructure as a service from a growing number of data centers and network points of presence around the world. SoftLayer’s customers range from Web startups to global enterprises.
There is little doubt that Big Data solutions will have an increasing role in the Enterprise IT mainstream over time. Big Data at Cloud Expo - to be held November 1-3, 2016, at the Santa Clara Convention Center in Santa Clara, CA - has announced its Call for Papers is open. Cloud computing is being adopted in one form or another by 94% of enterprises today. Tens of billions of new devices are being connected to The Internet of Things. And Big Data is driving this bus. An exponential increase is...
DevOps at Cloud Expo, taking place Nov 1-3, 2016, at the Santa Clara Convention Center in Santa Clara, CA, is co-located with 19th Cloud Expo and will feature technical sessions from a rock star conference faculty and the leading industry players in the world. The widespread success of cloud computing is driving the DevOps revolution in enterprise IT. Now as never before, development teams must communicate and collaborate in a dynamic, 24/7/365 environment. There is no time to wait for long dev...
Digital innovation is the next big wave of business transformation based on digital technologies of which IoT and Big Data are key components, For example: Business boundary innovation is a challenge to excavate third-party business value using IoT and BigData, like Nest Business structure innovation may propose re-building business structure from scratch, as Uber does in the taxicab industry The social model innovation is also a big challenge to the new social architecture with the design fr...
Data is an unusual currency; it is not restricted by the same transactional limitations as money or people. In fact, the more that you leverage your data across multiple business use cases, the more valuable it becomes to the organization. And the same can be said about the organization’s analytics. In his session at 19th Cloud Expo, Bill Schmarzo, CTO for the Big Data Practice at EMC, will introduce a methodology for capturing, enriching and sharing data (and analytics) across the organizati...
IoT is fundamentally transforming the auto industry, turning the vehicle into a hub for connected services, including safety, infotainment and usage-based insurance. Auto manufacturers – and businesses across all verticals – have built an entire ecosystem around the Connected Car, creating new customer touch points and revenue streams. In his session at @ThingsExpo, Macario Namie, Head of IoT Strategy at Cisco Jasper, will share real-world examples of how IoT transforms the car from a static p...
The many IoT deployments around the world are busy integrating smart devices and sensors into their enterprise IT infrastructures. Yet all of this technology – and there are an amazing number of choices – is of no use without the software to gather, communicate, and analyze the new data flows. Without software, there is no IT. In this power panel at @ThingsExpo, moderated by Conference Chair Roger Strukhoff, panelists will look at the protocols that communicate data and the emerging data analy...
SYS-CON Events announced today that China Unicom 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. China United Network Communications Group Co. Ltd ("China Unicom") was officially established in 2009 on the basis of the merger of former China Netcom and former China Unicom. China Unicom mainly operates a full range of telecommunications services including mobile broadband (GSM, WCDMA, LTE F...
The Transparent Cloud-computing Consortium (abbreviation: T-Cloud Consortium) will conduct research activities into changes in the computing model as a result of collaboration between "device" and "cloud" and the creation of new value and markets through organic data processing High speed and high quality networks, and dramatic improvements in computer processing capabilities, have greatly changed the nature of applications and made the storing and processing of data on the network commonplace.
Video experiences should be unique and exciting! But that doesn’t mean you need to patch all the pieces yourself. Users demand rich and engaging experiences and new ways to connect with you. But creating robust video applications at scale can be complicated, time-consuming and expensive. In his session at @ThingsExpo, Zohar Babin, Vice President of Platform, Ecosystem and Community at Kaltura, will discuss how VPaaS enables you to move fast, creating scalable video experiences that reach your...
Big Data has been changing the world. IoT fuels the further transformation recently. How are Big Data and IoT related? In his session at @BigDataExpo, Tony Shan, a renowned visionary and thought leader, will explore the interplay of Big Data and IoT. He will anatomize Big Data and IoT separately in terms of what, which, why, where, when, who, how and how much. He will then analyze the relationship between IoT and Big Data, specifically the drilldown of how the 4Vs of Big Data (Volume, Variety,...
If you’re responsible for an application that depends on the data or functionality of various IoT endpoints – either sensors or devices – your brand reputation depends on the security, reliability, and compliance of its many integrated parts. If your application fails to deliver the expected business results, your customers and partners won't care if that failure stems from the code you developed or from a component that you integrated. What can you do to ensure that the endpoints work as expect...
WebRTC adoption has generated a wave of creative uses of communications and collaboration through websites, sales apps, customer care and business applications. As WebRTC has become more mainstream it has evolved to use cases beyond the original peer-to-peer case, which has led to a repeating requirement for interoperability with existing infrastructures. In his session at @ThingsExpo, Graham Holt, Executive Vice President of Daitan Group, will cover implementation examples that have enabled ea...
Almost two-thirds of companies either have or soon will have IoT as the backbone of their business in 2016. However, IoT is far more complex than most firms expected. How can you not get trapped in the pitfalls? In his session at @ThingsExpo, Tony Shan, a renowned visionary and thought leader, will introduce a holistic method of IoTification, which is the process of IoTifying the existing technology and business models to adopt and leverage IoT. He will drill down to the components in this fra...
The Internet of Things can drive efficiency for airlines and airports. In their session at @ThingsExpo, Shyam Varan Nath, Principal Architect with GE, and Sudip Majumder, senior director of development at Oracle, will discuss the technical details of the connected airline baggage and related social media solutions. These IoT applications will enhance travelers' journey experience and drive efficiency for the airlines and the airports. The session will include a working demo and a technical d...