herenciageneticayenfermedad: World Rare Disease Day is less than a week away!

martes, 23 de febrero de 2016

World Rare Disease Day is less than a week away!

World Rare Disease Day is an annual observance to raise awareness for rare disease and improve access to treatments and medical representation for individuals with rare disease and their families. Created by European organization EURORDIS in 2008, this day is celebrated on the last day of February each year. The 9th annual World Rare Disease Day will be held on Monday, February 29, 2016. On this day, various activities take place globally.

Looking for ways to get involved?

•   Global Genes 2nd Annual Denim Dash Virtual 5k for Rare Disease - March 19-27, 2016 – While this virtual 5k takes place in March, World Rare Disease Day is a great day to start putting together a team to dash and fundraise with for rare disease awareness. This virtual 5k is designed to ensure that anyone, anywhere, can participate, show support and raise awareness for patients, family and friends of the Rare Disease Community. The cost to register is $35 for the U.S. participants, $40 for international participants and $15 for kids anywhere. Registration fees include a Denim Dash t-shirt, race bib, medal and Blue Denim Genes Ribbon. In order to receive a t-shirt, registration must be completed by 3/2/2016. Register and form teams here.

• 'I Love Someone RARE & Beautiful' T-Shirts - In partnership with the Gwendolyn Strong Foundation – Global Genes and the Gwendolyn Strong Foundation have partnered once again by bringing back the popular 'I love someone RARE & beautiful' loose fitting tee and baseball tee in celebration of World Rare Disease Day. They are LIMITED EDITION designs, so get them while they last! They can be purchased here.

•   Wear That You Care™ Campaign - All across the world people participate in supporting rare disease awareness by the Wear That You Care™ Campaign. Through this campaign, people show they care by wearing the Blue Denim Genes Ribbon™ and their favorite pair of jeans on February 29, 2016. Wear That You Care™ campaigns take place locally—supporters often urge their offices, teams or other groups to wear jeans, a blue denim genes ribbon and to make a donation in honor of World Rare Disease Day.

• Rarehouse - What does your style say about you? On World Rare Disease Day make sure it says that you are an advocate for the 350 million + people worldwide with a rare disease! Make sure your style starts a conversation and helps raise awareness this February 29th and always! Use code WRDD2016 to get 10% off when you shop for activist apparel here.

•   Share Your Story - There are millions of technology users who access social media everyday, this makes social media one of the best avenues to share your story and spread awareness. The new RAREToolkit: How to Promote Your Rare Disease Story Through Social Media will provide hands on tips and how-to's, from how to use some of the most popular platforms available to, how to effectively share your story through them. Check it out here.

•   Social Media Awareness - Patients, advocates, and industry alike can grow social awareness by sharing photos, information and events with Global Genes' Facebook, Twitter, and Instagram. Supporters can tag their photos or posts with hashtags #WearThatYouCare, #WRDD2016, and #CareAboutRare to help draw attention to their content. Additionally, supporters can visit www.globalgenes.org/CareAboutRare and upload their photo into photo frames to use as social media profile images to further help spread awareness.