Welcome!

News Feed Item

Global Genes Celebrates Seventh Annual World Rare Disease Day With Wear That You Care™ Events In 25 Countries

ALISO VIEJO, Calif., Feb. 24, 2014 /PRNewswire/ -- Global Genes (globalgenes.org), a leading patient advocacy organization representing the rare and genetic disease community, is once again inviting industry partners, patients, caregivers, family and friends of the tens of millions of people who suffer from rare and genetic diseases to Wear That You Care™ and support the seventh annual World Rare Disease Day on Friday, February 28, 2014. 

The Wear That You Care™ campaign was launched by Global Genes in 2010 to increase awareness of the 7,000 known rare and genetic diseases affecting approximately 250 million people globally.  All across the world people can show their support for the rare and genetic disease community by wearing the Blue Denim Genes Ribbon™ and their favorite pair of jeans on World Rare Disease Day.

"Numerous volunteers have been gathering at our headquarters over the past several months to make hundreds of thousands of Blue Denim Genes Ribbons™ that we have now distributed to advocates and foundations in over 25 countries for Rare Disease Day events," said Andrea Epstein, Executive Director, Global Genes. "Each year our program expands as advocates from communities across the globe help spread awareness of rare and genetic diseases as one of the largest global health challenges."

This year's World Rare Disease Day theme, "Join Together for Better Care," encourages the rare disease community to continue finding ways to work together to provide care for people living with rare diseases. 

As part of the Wear That You Care ™ campaign, numerous companies are supporting the program by allowing employees to wear jeans to work on Rare Disease Day. Employees are also contributing donations towards Global Genes to support expanding the ribbon program.  Many organizations and patient advocates are also organizing private, public and social media events to increase awareness for rare and genetic diseases in their local communities.  Some of these events include:

  • In Aliso Viejo, CA, Ambry Genetics will host a CEU approved rare disease awareness webinar for clinicians, genetic counselors and allied health professionals, where Global Genes will be participating as one of three speakers in the program
  • In Orange, CA, Children's Hospital of Orange County will hold an awareness event that includes on-site informational resources for parents of children with rare diseases
  • In Claremont, CA, Keck Graduate Institute will host their annual World Rare Day panel, with this year's topic entitled, "Raising Awareness of Orphan Drugs for Rare Diseases." Global Genes will also be represented on this year's panel
  • In La Jolla, CA, Sanford Burnham Medical Institute will hold their 5th annual Rare Disease Day Symposium where Global Genes representatives will be providing informational resources
  • In Henderson, Nevada, the 4th annual Little Miss Hannah's "Jeans for Genes Day" school awareness event will be held. Elementary school students will receive an age-appropriate education on the genetics of rare disease and show their compassion by creating personalized cards of "hope."
  • In Wynnewood, PA, Penn Wynne Elementary School will hold a Wear That You Care™ event for the second year in a row. Students and faculty will be wearing blue and/or denim in support of those affected by or living with rare diseases
  • In Bethesda, MD, the National Institutes of Health (NIH) will celebrate World Rare Disease Day with a day-long celebration.  The event will be held in the Masur Auditorium (Building 10) from 8:30 am to 5:00 pm. Attendance is free and open to the public.  NIH encourages all attendees to wear their favorite pair of jeans as part of the Wear That You Care™ awareness campaign 
  • On Facebook, advocates will be participating in a social media Wear That You Care™ awareness campaign by changing their profile and timeline pictures to "I Love Someone Who Is Rare"
  • On a national level, supporters can tune in to Lifetime TV's The Balancing Act on February 28th at 7am ET/PT to see Global Genes President and Founder Nicole Boice and Blog Managing Editor, Ilana Jacqueline on Behind the Mystery: Rare and Genetic series. The show will discuss the prevalence of rare diseases and give patients and advocates ideas on what they can do to search for treatments for their conditions
  • For a list of other World Rare Disease events by State, visit http://globalgenes.org/2014-world-rare-disease-day-community-events/

In Washington DC, Global Genes partner Rare Disease Legislative Advocates (RDLA) will hold numerous awareness events between February 25thFebruary 28th including their annual conference and lobby day that brings together hundreds of rare disease patient and parent advocates.  Events include:

Tuesday, February 25th

  • Legislative Conference at the National Press Club, 529 14th Street NW, Washington, DC
    • 8:15 am9:00 am: Registration and Breakfast
    • 9:00 am3:30 pm: General Session, lunch included
    • 3:30 pm4:30 pm: SoapBox Meeting Schedule overview
  • RDLA's 4th annual rare disease documentary screening and cocktail reception.  This year's event will feature Life According to Sam, an HBO documentary about Sam Berns, a charismatic and inspirational teenager who recently died from Progeria, a rare genetic condition that accelerates the aging process. Event begins at 5:30 pm at Carnegie Institution of Science, 1530 P Street Northwest, Washington DC

Wednesday, February 26th

Rare and genetic disease advocates from all over the United States will participate in Rare Disease Lobby Day on Wednesday, Feb. 26

  • 7:00 am - 8:30 am:  Training Breakfast at Top of the Hill, Reserve Officers Association, One Constitution Avenue, NE, Washington DC
  • 9:00 am5:00 pm: Capitol Hill Meetings with Members of Congress & Congressional Staff

Thursday, February 27

About Global Genes

Global Genes is a leading rare and genetic disease patient advocacy organization.  The organization 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:

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.

Latest Stories
What happens when the different parts of a vehicle become smarter than the vehicle itself? As we move toward the era of smart everything, hundreds of entities in a vehicle that communicate with each other, the vehicle and external systems create a need for identity orchestration so that all entities work as a conglomerate. Much like an orchestra without a conductor, without the ability to secure, control, and connect the link between a vehicle’s head unit, devices, and systems and to manage the ...
We are always online. We access our data, our finances, work, and various services on the Internet. But we live in a congested world of information in which the roads were built two decades ago. The quest for better, faster Internet routing has been around for a decade, but nobody solved this problem. We’ve seen band-aid approaches like CDNs that attack a niche's slice of static content part of the Internet, but that’s it. It does not address the dynamic services-based Internet of today. It does...
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 sett...
The WebRTC Summit New York, to be held June 6-8, 2017, at the Javits Center in New York City, NY, announces that its Call for Papers is now open. Topics include all aspects of improving IT delivery by eliminating waste through automated business models leveraging cloud technologies. WebRTC Summit is co-located with 20th International Cloud Expo and @ThingsExpo. WebRTC is the future of browser-to-browser communications, and continues to make inroads into the traditional, difficult, plug-in web ...
20th Cloud Expo, taking place June 6-8, 2017, at the Javits Center in New York City, NY, will feature technical sessions from a rock star conference faculty and the leading industry players in the world. Cloud computing is now being embraced by a majority of enterprises of all sizes. Yesterday's debate about public vs. private has transformed into the reality of hybrid cloud: a recent survey shows that 74% of enterprises have a hybrid cloud strategy.
WebRTC is the future of browser-to-browser communications, and continues to make inroads into the traditional, difficult, plug-in web communications world. The 6th WebRTC Summit continues our tradition of delivering the latest and greatest presentations within the world of WebRTC. Topics include voice calling, video chat, P2P file sharing, and use cases that have already leveraged the power and convenience of WebRTC.
Without lifecycle traceability and visibility across the tool chain, stakeholders from Planning-to-Ops have limited insight and answers to who, what, when, why and how across the DevOps lifecycle. This impacts the ability to deliver high quality software at the needed velocity to drive positive business outcomes. In his general session at @DevOpsSummit at 19th Cloud Expo, Phil Hombledal, Solution Architect at CollabNet, discussed how customers are able to achieve a level of transparency that e...
"We're a cybersecurity firm that specializes in engineering security solutions both at the software and hardware level. Security cannot be an after-the-fact afterthought, which is what it's become," stated Richard Blech, Chief Executive Officer at Secure Channels, in this SYS-CON.tv interview at @ThingsExpo, held November 1-3, 2016, at the Santa Clara Convention Center in Santa Clara, CA.
The Internet of Things (IoT) promises to simplify and streamline our lives by automating routine tasks that distract us from our goals. This promise is based on the ubiquitous deployment of smart, connected devices that link everything from industrial control systems to automobiles to refrigerators. Unfortunately, comparatively few of the devices currently deployed have been developed with an eye toward security, and as the DDoS attacks of late October 2016 have demonstrated, this oversight can ...
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...
Kubernetes is a new and revolutionary open-sourced system for managing containers across multiple hosts in a cluster. Ansible is a simple IT automation tool for just about any requirement for reproducible environments. In his session at @DevOpsSummit at 18th Cloud Expo, Patrick Galbraith, a principal engineer at HPE, discussed how to build a fully functional Kubernetes cluster on a number of virtual machines or bare-metal hosts. Also included will be a brief demonstration of running a Galera MyS...
Internet-of-Things discussions can end up either going down the consumer gadget rabbit hole or focused on the sort of data logging that industrial manufacturers have been doing forever. However, in fact, companies today are already using IoT data both to optimize their operational technology and to improve the experience of customer interactions in novel ways. In his session at @ThingsExpo, Gordon Haff, Red Hat Technology Evangelist, will share examples from a wide range of industries – includin...
Unless your company can spend a lot of money on new technology, re-engineering your environment and hiring a comprehensive cybersecurity team, you will most likely move to the cloud or seek external service partnerships. In his session at 18th Cloud Expo, Darren Guccione, CEO of Keeper Security, revealed what you need to know when it comes to encryption in the cloud.
Organizations planning enterprise data center consolidation and modernization projects are faced with a challenging, costly reality. Requirements to deploy modern, cloud-native applications simultaneously with traditional client/server applications are almost impossible to achieve with hardware-centric enterprise infrastructure. Compute and network infrastructure are fast moving down a software-defined path, but storage has been a laggard. Until now.
We're entering the post-smartphone era, where wearable gadgets from watches and fitness bands to glasses and health aids will power the next technological revolution. With mass adoption of wearable devices comes a new data ecosystem that must be protected. Wearables open new pathways that facilitate the tracking, sharing and storing of consumers’ personal health, location and daily activity data. Consumers have some idea of the data these devices capture, but most don’t realize how revealing and...