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
With over 720 million Internet users and 40–50% CAGR, the Chinese Cloud Computing market has been booming. When talking about cloud computing, what are the Chinese users of cloud thinking about? What is the most powerful force that can push them to make the buying decision? How to tap into them? In his session at 18th Cloud Expo, Yu Hao, CEO and co-founder of SpeedyCloud, answered these questions and discussed the results of SpeedyCloud’s survey.
19th Cloud Expo, taking place November 1-3, 2016, at the Santa Clara Convention Center in Santa Clara, CA, 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. Meanwhile, 94% of enterpri...
Actian Corporation has announced the latest version of the Actian Vector in Hadoop (VectorH) database, generally available at the end of July. VectorH is based on the same query engine that powers Actian Vector, which recently doubled the TPC-H benchmark record for non-clustered systems at the 3000GB scale factor (see tpc.org/3323). The ability to easily ingest information from different data sources and rapidly develop queries to make better business decisions is becoming increasingly importan...
To leverage Continuous Delivery, enterprises must consider impacts that span functional silos, as well as applications that touch older, slower moving components. Managing the many dependencies can cause slowdowns. See how to achieve continuous delivery in the enterprise.
Is the ongoing quest for agility in the data center forcing you to evaluate how to be a part of infrastructure automation efforts? As organizations evolve toward bimodal IT operations, they are embracing new service delivery models and leveraging virtualization to increase infrastructure agility. Therefore, the network must evolve in parallel to become equally agile. Read this essential piece of Gartner research for recommendations on achieving greater agility.
Today we can collect lots and lots of performance data. We build beautiful dashboards and even have fancy query languages to access and transform the data. Still performance data is a secret language only a couple of people understand. The more business becomes digital the more stakeholders are interested in this data including how it relates to business. Some of these people have never used a monitoring tool before. They have a question on their mind like “How is my application doing” but no id...
Kubernetes, Docker and containers are changing the world, and how companies are deploying their software and running their infrastructure. With the shift in how applications are built and deployed, new challenges must be solved. In his session at @DevOpsSummit at19th Cloud Expo, Sebastian Scheele, co-founder of Loodse, will discuss the implications of containerized applications/infrastructures and their impact on the enterprise. In a real world example based on Kubernetes, he will show how to ...
SYS-CON Events announced today that Venafi, the Immune System for the Internet™ and the leading provider of Next Generation Trust Protection, will exhibit at @DevOpsSummit at 19th International Cloud Expo, which will take place on November 1–3, 2016, at the Santa Clara Convention Center in Santa Clara, CA. Venafi is the Immune System for the Internet™ that protects the foundation of all cybersecurity – cryptographic keys and digital certificates – so they can’t be misused by bad guys in attacks...
Pulzze Systems was happy to participate in such a premier event and thankful to be receiving the winning investment and global network support from G-Startup Worldwide. It is an exciting time for Pulzze to showcase the effectiveness of innovative technologies and enable them to make the world smarter and better. The reputable contest is held to identify promising startups around the globe that are assured to change the world through their innovative products and disruptive technologies. There w...
SYS-CON Events announced today Telecom Reseller has been named “Media 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. Telecom Reseller reports on Unified Communications, UCaaS, BPaaS for enterprise and SMBs. They report extensively on both customer premises based solutions such as IP-PBX as well as cloud based and hosted platforms.
To paraphrase someone famous, "The definition of insanity is to do something the same way over and over again and expect a different result". Humans are creatures of habit and when it comes to storage, old habits die hard. Why do we continue to put our faith in legacy storage providers when they haven't invented anything new in decades. Sure, they re-badge their products every couple of years to make their messaging look modern, but ultimately, it's the same old stuff with a new coat of lipsti...
StarNet Communications Corp has announced the addition of three Secure Remote Desktop modules to its flagship X-Win32 PC X server. The new modules enable X-Win32 to safely tunnel the remote desktops from Linux and Unix servers to the user’s PC over encrypted SSH. Traditionally, users of PC X servers deploy the XDMCP protocol to display remote desktop environments such as the Gnome and KDE desktops on Linux servers and the CDE environment on Solaris Unix machines. XDMCP is used primarily on comp...
Smart Cities are here to stay, but for their promise to be delivered, the data they produce must not be put in new siloes. In his session at @ThingsExpo, Mathias Herberts, Co-founder and CTO of Cityzen Data, will deep dive into best practices that will ensure a successful smart city journey.
Using new techniques of information modeling, indexing, and processing, new cloud-based systems can support cloud-based workloads previously not possible for high-throughput insurance, banking, and case-based applications. In his session at 18th Cloud Expo, John Newton, CTO, Founder and Chairman of Alfresco, described how to scale cloud-based content management repositories to store, manage, and retrieve billions of documents and related information with fast and linear scalability. He addres...
SYS-CON Events announced today that StarNet Communications 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. StarNet Communications’ FastX is the industry first cloud-based remote X Windows emulator. Using standard Web browsers (FireFox, Chrome, Safari, etc.) users from around the world gain highly secure access to applications and data hosted on Linux-based servers in a central data center. ...