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

  • 8:00 am10:30 am: EveryLife Foundation for Rare Diseases Workshop for Patient Advocates.  Topics include FDA Regulatory Law & Policy.  8:00 am10:30 am Embassy of Greece, 2217 Massachusetts Ave NW, Washington DC
  • Rare Disease Congressional Caucus Briefing from 12:00 pm1:30 pm, Capitol Visitors Center, Room: HVC – 201. http://rareadvocates.org/feb-27th-caucus-briefing/
  • Global Genes Networking Reception from 5:00 pm8:00 pm at Darlington House, 1610 20th Street NW, Washington, DC. Space is limited. RSVP required.  Contact Carrie Ostrea, Global Genes Advocacy Director via email at [email protected]

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
In a world where the internet rules all, where 94% of business buyers conduct online research, and where e-commerce sales are poised to fall between $427 billion and $443 billion by the end of this year, we think it's safe to say that your website is a vital part of your business strategy. Whether you're a B2B company, a local business, or an e-commerce site, digital presence is key to maintain in your drive towards success. Digital Performance will take priority in 2018 for the following reason...
Rodrigo Coutinho is part of OutSystems' founders' team and currently the Head of Product Design. He provides a cross-functional role where he supports Product Management in defining the positioning and direction of the Agile Platform, while at the same time promoting model-based development and new techniques to deliver applications in the cloud.
All organizations that did not originate this moment have a pre-existing culture as well as legacy technology and processes that can be more or less amenable to DevOps implementation. That organizational culture is influenced by the personalities and management styles of Executive Management, the wider culture in which the organization is situated, and the personalities of key team members at all levels of the organization. This culture and entrenched interests usually throw a wrench in the work...
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...
Business professionals no longer wonder if they'll migrate to the cloud; it's now a matter of when. The cloud environment has proved to be a major force in transitioning to an agile business model that enables quick decisions and fast implementation that solidify customer relationships. And when the cloud is combined with the power of cognitive computing, it drives innovation and transformation that achieves astounding competitive advantage.
IoT is rapidly becoming mainstream as more and more investments are made into the platforms and technology. As this movement continues to expand and gain momentum it creates a massive wall of noise that can be difficult to sift through. Unfortunately, this inevitably makes IoT less approachable for people to get started with and can hamper efforts to integrate this key technology into your own portfolio. There are so many connected products already in place today with many hundreds more on the h...
In his session at Cloud Expo, Alan Winters, U.S. Head of Business Development at MobiDev, presented 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 maximize project result...
"Software-defined storage is a big problem in this industry because so many people have different definitions as they see fit to use it," stated Peter McCallum, VP of Datacenter Solutions at FalconStor 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.
"Our strategy is to focus on the hyperscale providers - AWS, Azure, and Google. Over the last year we saw that a lot of developers need to learn how to do their job in the cloud and we see this DevOps movement that we are catering to with our content," stated Alessandro Fasan, Head of Global Sales at Cloud Academy, in this SYS-CON.tv interview at 20th Cloud Expo, held June 6-8, 2017, at the Javits Center in New York City, NY.
Personalization has long been the holy grail of marketing. Simply stated, communicate the most relevant offer to the right person and you will increase sales. To achieve this, you must understand the individual. Consequently, digital marketers developed many ways to gather and leverage customer information to deliver targeted experiences. In his session at @ThingsExpo, Lou Casal, Founder and Principal Consultant at Practicala, discussed how the Internet of Things (IoT) has accelerated our abilit...
In his keynote at 19th Cloud Expo, Sheng Liang, co-founder and CEO of Rancher Labs, discussed the technological advances and new business opportunities created by the rapid adoption of containers. With the success of Amazon Web Services (AWS) and various open source technologies used to build private clouds, cloud computing has become an essential component of IT strategy. However, users continue to face challenges in implementing clouds, as older technologies evolve and newer ones like Docker c...
Data is the fuel that drives the machine learning algorithmic engines and ultimately provides the business value. In his session at Cloud Expo, Ed Featherston, a director and senior enterprise architect at Collaborative Consulting, discussed the key considerations around quality, volume, timeliness, and pedigree that must be dealt with in order to properly fuel that engine.
As organizations shift towards IT-as-a-service models, the need for managing and protecting data residing across physical, virtual, and now cloud environments grows with it. Commvault can ensure protection, access and E-Discovery of your data – whether in a private cloud, a Service Provider delivered public cloud, or a hybrid cloud environment – across the heterogeneous enterprise. In his general session at 18th Cloud Expo, Randy De Meno, Chief Technologist - Windows Products and Microsoft Part...
Andi Mann, Chief Technology Advocate at Splunk, is an accomplished digital business executive with extensive global expertise as a strategist, technologist, innovator, marketer, and communicator. For over 30 years across five continents, he has built success with Fortune 500 corporations, vendors, governments, and as a leading research analyst and consultant.
"Cloud computing is certainly changing how people consume storage, how they use it, and what they use it for. It's also making people rethink how they architect their environment," stated Brad Winett, Senior Technologist for DDN Storage, in this SYS-CON.tv interview at 20th Cloud Expo, held June 6-8, 2017, at the Javits Center in New York City, NY.