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
For organizations that have amassed large sums of software complexity, taking a microservices approach is the first step toward DevOps and continuous improvement / development. Integrating system-level analysis with microservices makes it easier to change and add functionality to applications at any time without the increase of risk. Before you start big transformation projects or a cloud migration, make sure these changes won’t take down your entire organization.
"My role is working with customers, helping them go through this digital transformation. I spend a lot of time talking to banks, big industries, manufacturers working through how they are integrating and transforming their IT platforms and moving them forward," explained William Morrish, General Manager Product Sales at Interoute, in this SYS-CON.tv interview at 18th Cloud Expo, held June 7-9, 2016, at the Javits Center in New York City, NY.
With the introduction of IoT and Smart Living in every aspect of our lives, one question has become relevant: What are the security implications? To answer this, first we have to look and explore the security models of the technologies that IoT is founded upon. In his session at @ThingsExpo, Nevi Kaja, a Research Engineer at Ford Motor Company, will discuss some of the security challenges of the IoT infrastructure and relate how these aspects impact Smart Living. The material will be delivered i...
SYS-CON Events announced today that Ocean9will exhibit at SYS-CON's 20th International Cloud Expo®, which will take place on June 6-8, 2017, at the Javits Center in New York City, NY. Ocean9 provides cloud services for Backup, Disaster Recovery (DRaaS) and instant Innovation, and redefines enterprise infrastructure with its cloud native subscription offerings for mission critical SAP workloads.
Your homes and cars can be automated and self-serviced. Why can't your storage? From simply asking questions to analyze and troubleshoot your infrastructure, to provisioning storage with snapshots, recovery and replication, your wildest sci-fi dream has come true. In his session at @DevOpsSummit at 20th Cloud Expo, Dan Florea, Director of Product Management at Tintri, will provide a ChatOps demo where you can talk to your storage and manage it from anywhere, through Slack and similar services ...
Imagine having the ability to leverage all of your current technology and to be able to compose it into one resource pool. Now imagine, as your business grows, not having to deploy a complete new appliance to scale your infrastructure. Also imagine a true multi-cloud capability that allows live migration without any modification between cloud environments regardless of whether that cloud is your private cloud or your public AWS, Azure or Google instance. Now think of a world that is not locked i...
SYS-CON Events announced today that Auditwerx will exhibit at SYS-CON's 20th International Cloud Expo®, which will take place on June 6-8, 2017, at the Javits Center in New York City, NY. Auditwerx specializes in SOC 1, SOC 2, and SOC 3 attestation services throughout the U.S. and Canada. As a division of Carr, Riggs & Ingram (CRI), one of the top 20 largest CPA firms nationally, you can expect the resources, skills, and experience of a much larger firm combined with the accessibility and atten...
In his session at @ThingsExpo, Eric Lachapelle, CEO of the Professional Evaluation and Certification Board (PECB), will provide an overview of various initiatives to certifiy the security of connected devices and future trends in ensuring public trust of IoT. Eric Lachapelle is the Chief Executive Officer of the Professional Evaluation and Certification Board (PECB), an international certification body. His role is to help companies and individuals to achieve professional, accredited and worldw...
MongoDB Atlas leverages VPC peering for AWS, a service that allows multiple VPC networks to interact. This includes VPCs that belong to other AWS account holders. By performing cross account VPC peering, users ensure networks that host and communicate their data are secure. In his session at 20th Cloud Expo, Jay Gordon, a Developer Advocate at MongoDB, will explain how to properly architect your VPC using existing AWS tools and then peer with your MongoDB Atlas cluster. He'll discuss the secur...
DevOps is often described as a combination of technology and culture. Without both, DevOps isn't complete. However, applying the culture to outdated technology is a recipe for disaster; as response times grow and connections between teams are delayed by technology, the culture will die. A Nutanix Enterprise Cloud has many benefits that provide the needed base for a true DevOps paradigm. In his Day 3 Keynote at 20th Cloud Expo, Chris Brown, a Solutions Marketing Manager at Nutanix, will explore t...
In his session at Cloud Expo, Alan Winters, an entertainment executive/TV producer turned serial entrepreneur, will present a success story of an entrepreneur who has both suffered through and benefited from offshore development across multiple businesses: The smart choice, or how to select the right offshore development partner Warning signs, or how to minimize chances of making the wrong choice Collaboration, or how to establish the most effective work processes Budget control, or how to m...
Deep learning has been very successful in social sciences and specially areas where there is a lot of data. Trading is another field that can be viewed as social science with a lot of data. With the advent of Deep Learning and Big Data technologies for efficient computation, we are finally able to use the same methods in investment management as we would in face recognition or in making chat-bots. In his session at 20th Cloud Expo, Gaurav Chakravorty, co-founder and Head of Strategy Development ...
SYS-CON Events announced today that Linux Academy, the foremost online Linux and cloud training platform and community, will exhibit at SYS-CON's 20th International Cloud Expo®, which will take place on June 6-8, 2017, at the Javits Center in New York City, NY. Linux Academy was founded on the belief that providing high-quality, in-depth training should be available at an affordable price. Industry leaders in quality training, provided services, and student certification passes, its goal is to c...
"delaPlex is a software development company. We do team-based outsourcing development," explained Mark Rivers, COO and Co-founder of delaPlex Software, in this SYS-CON.tv interview at 18th Cloud Expo, held June 7-9, 2016, at the Javits Center in New York City, NY.
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.