Alone we are Rare, Together we are strong

Today is February 29, 2012. Other than the fact that we are in the midst of a leap year, celebrating this extra day in February, there is also something very important taking place today across the globe.  Today is the fifth international Rare Disease Day. For such a short month, February has a lot of significant occurrences that receive enormous amounts of attention; Black History Month, American Heart Month, and the ever so popular Valentine’s Day are just a few things that take up a lot of February’s attention. I heard about Rare Disease Day for the first time EVER on Monday and I am pleased to share my new knowledge about this rapidly growing awareness campaign.

Let’s start with the basics. What is a Rare Disease?

There is no single, widely accepted definition for rare diseases. Some definitions rely solely on the number of people living with a disease, and other definitions include other factors, such as the existence of adequate treatments or the severity of the disease. A good example of this being that any form of cancer is considered “rare” among children; the same categorization might not be used for an adult.

The National Institutes of Health suggests there are about 7,000 rare diseases throughout the world. In the United States, a rare disease is generally defined as one that affects fewer than two-hundred thousand people; about eighty percent of rare diseases are genetic in origin and it is estimated that about half of all rare diseases affect children. Rare diseases can be chronic, progressive, debilitating, disabling, severe and life-threatening. Information is often scarce and research is usually insufficient.

People affected face challenges such as delays in obtaining a diagnosis, misdiagnosis, psychological burden and lack of support services for the patient and family. The goals remain for rare disease patients to obtain the highest attainable standard of health and to be provided the resources required to overcome common obstacles in their lives. In 2008, someone noticed the dire need for a coalition to begin within the Rare Disease community and that’s when the movement took flight.

When did Rare Disease Day Start?

On February 29, 2008, a “rare day”, was the 1st Rare Disease Day in Europe. For the first time, patient groups from different countries representing a variety of diseases collaborated on a large-scale awareness-raising campaign. Highlights for the first year of awareness include marches, lectures, documentaries, fundraising, murals, and distribution of information throughout different countries.

On the second Rare Disease Day in 2009 on February 28, the success of the first year lead to new partnerships within 19 rare disease national alliances and new key supporters and contributors from the US, China, Australia, Taiwan and Latin America joining the action.

For the first time the US participated through The National Organization for Rare Disorders (NORD) who mobilized more than 200 patient organizations generating great enthusiasm.In 2010 the theme concentrated on the importance of rare disease research and the hope research represents for the millions of rare disease patients living without a cure.

In 2011, national alliances in 25 countries combined their efforts to spotlight ‘rare diseases and health inequalities’ and join around the slogan “Rare but Equal”. Last year’s event, on February 28, 2011 saw the arrival of 10 new countries to total 55 participating countries around the globe.

What is happening today?

Many organizations across the world are doing different things to raise awareness today. Some of the highlighted events in the US are:

  • The National Institutes of Health (NIT) are hosting a daylong symposium focusing on what’s new in rare disease research in Bethesda, MD
  • In honor of Rare Disease Day 2012, the Food and Drug Administration (FDA) is planning to host a special day-long event on March 1, 2012, for rare disease patient advocates.
  • At 12:00 noon (GMT) people around the world will Join and raise their hands to show Solidarity with rare disease patients around the world!
  • For a complete list of what is happening in states across the US, go to http://rarediseaseday.us/events/events/
  • Link to Global Rare Disease Day website: http://www.rarediseaseday.org/

 

Wear that You Care

Started in 2009, The Global Genes Project is worldwide rare disease awareness campaign designed around a denim jeans theme and a blue denim ribbon, similar to the pink ribbon for Breast Cancer, has become the unifying symbol of hope for those touched by rare diseases. The Global Genes campaign uses a simple concept of “jeans and genes” to broadly promote the needs of the rare disease community. The organization’s mission emphasizes increasing rare disease awareness, public and physician education, building community through social media and funding research to find rare disease treatments and cures. You can check out @rarediseaseday on twitter, and see posts from people and families who live with rare diseases everyday on the event facebook page, http://www.facebook.com/rarediseaseday?sk=wall

During this leap day in February, we can at least try and promote the “alone we are rare, together we are strong” mentality. It was rather enlightening to see that within five years, fifty-five countries have become supporters of the Rare Disease campaign, and I can only assume the numbers will grow after today. If this is the first time you are hearing about Rare Disease Day, take a minute to learn more about this popular awareness movement.  The Community Health Center, Inc. works hard every day to make patients feel like they are not alone; the more people realize their strength in numbers, the more awareness, research, and knowledge can be passed along to make a significant difference in somebody’s quality of life.

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