International Rare Disease Day: Join the Movement

By Nicole Boice, President and Founder, RARE Project

Being diagnosed with any illness can be overwhelming. Imagine what it’s like, though, to be diagnosed with a disease that you’ve never heard of – maybe even one that your doctor has never seen before. Millions of people start this diagnostic odyssey on their own, with little or no support, no real direction, with feelings of isolation and fear. That’s exactly the situation in which millions of people who are diagnosed with or have a loved one diagnosed with a rare disease find themselves.

Nicole Boice

Nicole Boice, President and Founder, RARE Project

The irony however is that, “rare diseases” aren’t so rare. In fact, one in every ten Americans has a rare disease, classified by a patient population of less than 200,000. All told, there are more than 7,000 rare diseases, but sadly, only about 15% have a patient support or advocacy organization and none of these diseases has a known cure.  With little to know support for the majority of these rare diseases it is no surprise that less than 5 percent have an associated therapy or treatment.  This needs to change. . . Now!

While a few rare diseases receive a fair amount of attention, thousands of others do not. One of our primary goals at RARE Project is to help bring rare diseases to the forefront of public consciousness. On February 29, we once again will proudly join forces with many other individuals and organizations in the U. S. and globally to celebrate International Rare Disease Day.

Established five years ago by EURODIS – Europe’s leading advocacy group for rare disease patients – World Rare Disease Day enables those impacted by rare diseases to become a united force that embodies the meaning of “strength in numbers.” With approximately 350 million people world-wide affected by rare disease, this community is deserving of this level of support and attention globally. Rare disease affects more people than those with AIDS and Breast Cancer combined, and think about the level of support, funding and attention that these diseases have garnered. It is the decade for rare disease, and we are working with the larger global community to ensure that this  RARE community of millions be heard. In 2009, the National Organization for Rare Disorders (NORD) partnered with EURORDIS to bring this important initiative to the U.S. with the goal of creating a unified day that supports individual patients while helping organize the rare disease community around common interests; a call for more research and investment in developing treatments, and someday, cures, for these diseases. RARE Project continues to help develop programs that engage people to support World Rare Disease Day. However, RARE Project also realizes that the community needs more support than one day a year, which is why the Global Genes campaign for Rare Disease is an ongoing initiative that organizations and individuals can partake in all year long.

The reality for the rare disease community is that advancements are being driven by concentrated pockets of patients, parents, and others who are working at the grassroots level to highlight the unique needs of those facing rare diseases, and to encourage the healthcare industry and government to focus more resources on these diseases. Organizations like RARE Project and initiatives like World Rare Disease Day provide a visible national and global platform to help rare disease patient communities amplify their messages and reach a much wider audience.

Join The Movement, Spread The Word: It’s as easy as wearing a pair of jeans! Yep, it can really be that simple.  RARE Project has developed a ‘Wear That You Care’ campaign (as part of the Global Genes awareness initiative) that creates an easy way to encourage support for this community of millions in need. Join us here to learn more.

We’re also encouraging people to help us bring together a community of 1 million people supporting these families globally.  “1 million for RARE”, is a Facebook campaign that is being used as a tool to help connect the world around this common cause. If you know anyone who is affected, or simply want to help we need you now! Join us at www.facebook.com/globalgenesproject

You can help!  It’s this easy:

  1. Wear Jeans on Feb 29
  2. Distribute/wear Blue Denim Ribbons of Hope
  3. Join the Facebook Campaign
  4. Spread the word

So mark your calendars for February 29 – a rare day in itself – and get involved to help make a difference in the lives of millions of people in the U.S. and around the world impacted by rare disease.

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