|By PR Newswire||
|February 24, 2014 05:00 AM EST||
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 25th – February 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 am – 9:00 am: Registration and Breakfast
- 9:00 am – 3:30 pm: General Session, lunch included
- 3:30 pm – 4:30 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 am – 5:00 pm: Capitol Hill Meetings with Members of Congress & Congressional Staff
Thursday, February 27
- 8:00 am – 10:30 am: EveryLife Foundation for Rare Diseases Workshop for Patient Advocates. Topics include FDA Regulatory Law & Policy. 8:00 am – 10:30 am Embassy of Greece, 2217 Massachusetts Ave NW, Washington DC
- Rare Disease Congressional Caucus Briefing from 12:00 pm – 1:30 pm, Capitol Visitors Center, Room: HVC – 201. http://rareadvocates.org/feb-27th-caucus-briefing/
- Global Genes Networking Reception from 5:00 pm – 8:00 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 firstname.lastname@example.org
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:
- Web: http://globalgenes.org/
- Facebook: https://www.facebook.com/globalgenesproject?ref=br_tf
- Twitter: @GlobalGenes - https://twitter.com/GlobalGenes
SOURCE Global Genes