Welcome!

Open Source Cloud Authors: Pat Romanski, Liz McMillan, Yeshim Deniz, Stackify Blog, Vaibhaw Pandey

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
In his keynote at 18th Cloud Expo, Andrew Keys, Co-Founder of ConsenSys Enterprise, provided an overview of the evolution of the Internet and the Database and the future of their combination – the Blockchain. Andrew Keys is Co-Founder of ConsenSys Enterprise. He comes to ConsenSys Enterprise with capital markets, technology and entrepreneurial experience. Previously, he worked for UBS investment bank in equities analysis. Later, he was responsible for the creation and distribution of life settle...
Coca-Cola’s Google powered digital signage system lays the groundwork for a more valuable connection between Coke and its customers. Digital signs pair software with high-resolution displays so that a message can be changed instantly based on what the operator wants to communicate or sell. In their Day 3 Keynote at 21st Cloud Expo, Greg Chambers, Global Group Director, Digital Innovation, Coca-Cola, and Vidya Nagarajan, a Senior Product Manager at Google, discussed how from store operations and ...
In his session at 21st Cloud Expo, Raju Shreewastava, founder of Big Data Trunk, provided a fun and simple way to introduce Machine Leaning to anyone and everyone. He solved a machine learning problem and demonstrated an easy way to be able to do machine learning without even coding. Raju Shreewastava is the founder of Big Data Trunk (www.BigDataTrunk.com), a Big Data Training and consulting firm with offices in the United States. He previously led the data warehouse/business intelligence and B...
"IBM is really all in on blockchain. We take a look at sort of the history of blockchain ledger technologies. It started out with bitcoin, Ethereum, and IBM evaluated these particular blockchain technologies and found they were anonymous and permissionless and that many companies were looking for permissioned blockchain," stated René Bostic, Technical VP of the IBM Cloud Unit in North America, in this SYS-CON.tv interview at 21st Cloud Expo, held Oct 31 – Nov 2, 2017, at the Santa Clara Conventi...
A strange thing is happening along the way to the Internet of Things, namely far too many devices to work with and manage. It has become clear that we'll need much higher efficiency user experiences that can allow us to more easily and scalably work with the thousands of devices that will soon be in each of our lives. Enter the conversational interface revolution, combining bots we can literally talk with, gesture to, and even direct with our thoughts, with embedded artificial intelligence, whic...
BnkToTheFuture.com is the largest online investment platform for investing in FinTech, Bitcoin and Blockchain companies. We believe the future of finance looks very different from the past and we aim to invest and provide trading opportunities for qualifying investors that want to build a portfolio in the sector in compliance with international financial regulations.
Product connectivity goes hand and hand these days with increased use of personal data. New IoT devices are becoming more personalized than ever before. In his session at 22nd Cloud Expo | DXWorld Expo, Nicolas Fierro, CEO of MIMIR Blockchain Solutions, will discuss how in order to protect your data and privacy, IoT applications need to embrace Blockchain technology for a new level of product security never before seen - or needed.
Leading companies, from the Global Fortune 500 to the smallest companies, are adopting hybrid cloud as the path to business advantage. Hybrid cloud depends on cloud services and on-premises infrastructure working in unison. Successful implementations require new levels of data mobility, enabled by an automated and seamless flow across on-premises and cloud resources. In his general session at 21st Cloud Expo, Greg Tevis, an IBM Storage Software Technical Strategist and Customer Solution Architec...
Imagine if you will, a retail floor so densely packed with sensors that they can pick up the movements of insects scurrying across a store aisle. Or a component of a piece of factory equipment so well-instrumented that its digital twin provides resolution down to the micrometer.
When shopping for a new data processing platform for IoT solutions, many development teams want to be able to test-drive options before making a choice. Yet when evaluating an IoT solution, it’s simply not feasible to do so at scale with physical devices. Building a sensor simulator is the next best choice; however, generating a realistic simulation at very high TPS with ease of configurability is a formidable challenge. When dealing with multiple application or transport protocols, you would be...
Nordstrom is transforming the way that they do business and the cloud is the key to enabling speed and hyper personalized customer experiences. In his session at 21st Cloud Expo, Ken Schow, VP of Engineering at Nordstrom, discussed some of the key learnings and common pitfalls of large enterprises moving to the cloud. This includes strategies around choosing a cloud provider(s), architecture, and lessons learned. In addition, he covered some of the best practices for structured team migration an...
No hype cycles or predictions of a gazillion things here. IoT is here. You get it. You know your business and have great ideas for a business transformation strategy. What comes next? Time to make it happen. In his session at @ThingsExpo, Jay Mason, an Associate Partner of Analytics, IoT & Cybersecurity at M&S Consulting, presented a step-by-step plan to develop your technology implementation strategy. He also discussed the evaluation of communication standards and IoT messaging protocols, data...
Smart cities have the potential to change our lives at so many levels for citizens: less pollution, reduced parking obstacles, better health, education and more energy savings. Real-time data streaming and the Internet of Things (IoT) possess the power to turn this vision into a reality. However, most organizations today are building their data infrastructure to focus solely on addressing immediate business needs vs. a platform capable of quickly adapting emerging technologies to address future ...
We are given a desktop platform with Java 8 or Java 9 installed and seek to find a way to deploy high-performance Java applications that use Java 3D and/or Jogl without having to run an installer. We are subject to the constraint that the applications be signed and deployed so that they can be run in a trusted environment (i.e., outside of the sandbox). Further, we seek to do this in a way that does not depend on bundling a JRE with our applications, as this makes downloads and installations rat...
Widespread fragmentation is stalling the growth of the IIoT and making it difficult for partners to work together. The number of software platforms, apps, hardware and connectivity standards is creating paralysis among businesses that are afraid of being locked into a solution. EdgeX Foundry is unifying the community around a common IoT edge framework and an ecosystem of interoperable components.
DX World EXPO, LLC, a Lighthouse Point, Florida-based startup trade show producer and the creator of "DXWorldEXPO® - Digital Transformation Conference & Expo" has announced its executive management team. The team is headed by Levent Selamoglu, who has been named CEO. "Now is the time for a truly global DX event, to bring together the leading minds from the technology world in a conversation about Digital Transformation," he said in making the announcement.
In this strange new world where more and more power is drawn from business technology, companies are effectively straddling two paths on the road to innovation and transformation into digital enterprises. The first path is the heritage trail – with “legacy” technology forming the background. Here, extant technologies are transformed by core IT teams to provide more API-driven approaches. Legacy systems can restrict companies that are transitioning into digital enterprises. To truly become a lead...
Digital Transformation (DX) is not a "one-size-fits all" strategy. Each organization needs to develop its own unique, long-term DX plan. It must do so by realizing that we now live in a data-driven age, and that technologies such as Cloud Computing, Big Data, the IoT, Cognitive Computing, and Blockchain are only tools. In her general session at 21st Cloud Expo, Rebecca Wanta explained how the strategy must focus on DX and include a commitment from top management to create great IT jobs, monitor ...
"Cloud Academy is an enterprise training platform for the cloud, specifically public clouds. We offer guided learning experiences on AWS, Azure, Google Cloud and all the surrounding methodologies and technologies that you need to know and your teams need to know in order to leverage the full benefits of the cloud," explained Alex Brower, VP of Marketing at Cloud Academy, in this SYS-CON.tv interview at 21st Cloud Expo, held Oct 31 – Nov 2, 2017, at the Santa Clara Convention Center in Santa Clar...
The IoT Will Grow: In what might be the most obvious prediction of the decade, the IoT will continue to expand next year, with more and more devices coming online every single day. What isn’t so obvious about this prediction: where that growth will occur. The retail, healthcare, and industrial/supply chain industries will likely see the greatest growth. Forrester Research has predicted the IoT will become “the backbone” of customer value as it continues to grow. It is no surprise that retail is ...