World Rare Disease Day Celebrates Patient Advocacy and Activism Around The Globe

World Rare Disease Day Celebrates Patient Advocacy and Activism Around The Globe

Global Genes™ and the identifiable Blue Denim Genes Ribbon™ provides opportunity to show support and help build awareness

Global Genes, a leading patient advocacy organization with the mission to eliminate the challenges of rare disease, is inviting industry partners to support the eighth annual World Rare Disease Day. World Rare Disease Day is a day of advocacy to call attention to rare disease in the United States and around the globe. Created by European organization EURORDIS in 2008, this day is celebrated on the last day of February each year. Over 600 leading partner organizations and foundations and thousands of advocates and supporters have already signed on to participate in Global Genes’ popular Wear That You Care™ and Blue Denim Genes Ribbon™ awareness campaigns.  Just as the pink ribbon symbolizes breast cancer awareness and the red dress symbolizes heart health, the Blue Denim Genes Ribbon has become the universal sign for rare disease awareness since its inception in 2009.

Over 200,000 Blue Denim Genes Ribbons have been distributed to over 15 countries in the past few weeks for upcoming awareness events created by patients, advocates and biotech partners.  Supporters can also participate in this awareness campaign through social media.

Rare Facts – Rare is Not So Rare

About 7,000 known rare diseases have been identified around the world affecting approximately 350 million people.   As many as 30 million Americans (1 in 10 people) suffer from a rare disease, often struggling not just from the medical condition itself, but also to get proper diagnosis, information and care. Shockingly, rare diseases impact more people than AIDS and Cancer combined, which is why this time of unity is so critical for the rare disease stakeholders.  Working together, the rare disease community can build greater voice, create new champions, change perceptions, and catalyze new efforts and successes for the millions of Americans impacted by rare disease daily.

February/March Events for Rare Disease Awareness

Leading up to World Rare Disease Day 2015 and throughout the month of March, Global Genes is working with various organizations to increase rare disease awareness and education. Below are several upcoming events:

  • Various events are being held all over the world by Global Genes’ Industry Partners: Alexion, Biomarin, Connexion Healthcare, Dicerna Pharmaceuticals, Discovery USA, Horizon Government Affairs, Horizon Pharma, Novartis Oncology, Premier Research International, Raptor Pharmaceuticals, RASopathies Network, Retrophin, Sarepta Therapeutics, Shire, Synageva BioPharma, and TGen.
  • Rare Disease Legislative Associates (RDLA) Week on Capitol Hill (Washington, DC) February 23-27, Washington DC. More information here.
  • Rare Disease Lobby Day on Capitol Hill (Washington, DC) – Over 200 advocates will meet with over 800 legislators in support Rare Disease at the annual Lobby Day, Wednesday, February 25. More info here
  • Rare Disease Day at the National Institutes of Health(Bethesda, Maryland): On February 27, 2015, the National Institutes of Health (NIH) will celebrate the eighth annual Rare Disease Day with a day-long celebration and recognition of the various rare diseases research activities supported by various offices at NIH. More information here.
  • UC Irvine Health Sciences Luncheon,  Sixth Annual Rare Disease Day Symposium at Sanford│Burnham Medical Research Institute in San Diego and Grand Rounds focused on Rare Disease at Children’s Hospital Orange County (CA)
  • Tweet Chat in Partnership with Wego Health – Focusing on community events and facts & stats surrounding World Rare Disease Day. Thursday, February 19 at 2PM EST, participants can log on to Twitter and follow hashtags #RARETalk and #hachat to share ideas and win Global Genes & Wego Health swag, Walgreens gift cards, and more!
  • Global Genes 1st Annual Denim Dash Virtual 5k Run/Walk for Rare Disease (Virtual/Global) March 21-29, 2015 –The Denim Dash was created through collaborative efforts between Orphan Drug Solutions and Global Genes as their first annual virtual 5K event. This virtual 5k is designed to ensure that anyone, anywhere, can participate and show their support and raise awareness for patients, family and friends of the Rare Disease Community, while also helping to enrich and sustain the educational programs created by Global Genes! The cost to register is $35 and includes your Denim Dash t-shirt, race bib and Blue Denim Genes Ribbon. In order to receive a t-shirt, registration must be completed by 3/6/2015. Register here.

Give RARE (Online) Give RARE is a single day (March 3rd) for the world to GIVE to RARE disease! In partnership with Zenzaga, the Give RARE technology platform allows rare disease nonprofits to sign up easily to create a donation page, raise funds for their cause and get access to win prize funds from sponsors. On Tuesday, March 3rd, watch the non-profit leader boards rise! Grants will be given out through the day. It’s easy to support your favorite cause at http://giverare.org!

 

 

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