Rare Disease Day

 

Today is Rare Disease Day.

This is a worldwide initiative to bring greater awareness to those who suffer with rare diseases.  Rare Disease Day in the United States is sponsored by NORD (National Organization for Rare Disorders) and Rare Disease Day Worldwide is sponsored by Eurodis (Rare Diseases Europe).

I’m actually really, really bummed out that Rare Disease Day is today, because I only heard about it for the first time on Tuesday.  That didn’t give me any time to DO anything for the occasion.

Because, while sponsored by these large organizations, this really is quite the grass-roots effort.  

Had I the time, I would have sent out a press kit to my local newspapers and TV stations, contacted some teacher friends of mine about doing a presentation in their classrooms, and perhaps tried to organize some activity – a charity run or auction, for example – for my area.  Sadly, my entire state has NO activities scheduled for the day, so I couldn’t even jump in on someone else’s great plan!

But I’m new to the world of Rare Diseases; Mr. Happy has only been diagnosed since July, and this is my first ever Rare Disease Day (though it is their 6th annual Day).  So I didn’t know it was coming up.

I’m doing the best I can, though!  I signed up yesterday to be an Ambassador for Rare Disease Day and am going to do my part to spread the word!

This entire blog has been dedicated to the story of my children and their strange, rare medical conditions.  Their diseases.  So I think it has been made terribly clear the loneliness, frustration, isolation, and ignorance we’ve dealt with as sufferers of a Rare Disease.

The thing is, it’s not really that RARE to have a Rare Disease!  From the Rare Disease US website:

In the U.S., any disease affecting fewer than 200,000 people is considered rare. This definition comes from the Orphan Drug Act of 1983 and is slightly different from the definition used in Europe. There are nearly 7,000 rare diseases affecting nearly 30 million Americans. In other words, almost one in ten Americans are suffering from rare diseases.

Besides dealing with their specific medical problems, people with rare diseases struggle to get a proper diagnosis, find information, and get treatment. The rarity of their conditions makes medical research more difficult.

– See more at: http://rarediseaseday.us/about/#sthash.9SCAHViL.dpuf

So there are LOTS of us out here!

But in our individual struggles to find good help and good answers, we feel very, very alone.  

Rare Disease Day has been created to alleviate that isolation; to bring together all the people who struggle alone for one day to remind them – and the world at large – that we matter.

Our diseases are worth researching.  

Our children are worth saving.  

Our lives are worth living.

WE MATTER.

The theme for this year’s Rare Disease Day is “Rare Disorders Without Borders“.  It may seem like common sense to the average person that if all the research doctors in the world who work on a specific, rare disease all put their resources and brains together, they’d come up with answers more quickly and effectively…but it doesn’t always happen that way.

I’ll let the Rare Disease Day information packet explain this years goals:

Fighting diseases which affect only a few people in each country and for which expertise is scarce and scattered requires cross-border cooperation.

Patients and their families who feel isolated because of the rareness of their diseases should know that there are more than 6000 rare diseases affecting more than 60 million people in Europe and the US alone. Most of these diseases are genetic, serious, chronic and debilitating. They affect people in similar ways. Reaching out across borders can help them find common solutions and remind them they are not alone.

Advances in rare disease research have more chances of succeeding if sought after internationally when hundreds of teams of researchers from different countries work together to understand the disease and find therapies. Financial resources for research will go further if pooled with other funding from various countries: This is the idea behind the International Rare Disease Research Consortium (IRDiRC) which has already rallied the support of 10 countries.

Policies in healthcare and social services which have proven beneficial to people living with rare diseases in one country should be standardised and replicated internationally. This is the idea behind the European Union’s call for countries to develop National Plans for Rare Diseases in all Member States by the end of 2013.This initiative is intended to improve coordination of rare disease policies at the national level – following a common road map – and then to harmonise them across Europe.

The theme for 2013 reminds us that looking at rare diseases from an international perspective is particularly important, in terms of research, health policy and for the millions of patients and families throughout the world who can break out of their isolation though a vast international network of solidarity.

There are over one hundred million people

living with a rare disease around the world.

Take down borders, for rare disorders.

Show your solidarity today!”

So what are we hoping to accomplish with these efforts?  

Awareness.  

• Awareness from the general public that LOTS of people have rare diseases, and that not all research money needs to go to more well-known disorders.
• Awareness from policy-makers that their health-care policies make a difference in the world of 1 in 10 Americans.
• Awareness from medical personnel about the Rare Diseases that exist, hopefully prompting them to learn more to help their patients.

How can you help?

Share this blog post link with everyone you know.  Email it.  Tweet it.  Blog it.  FB Share and Like it.  Spread it around, so that more people will read about Rare Disease Day, visit the website, watch the videos, and learn.  So more people will become Aware.

Share this video link – the official Rare Disease Day video.

Look for activities in your area, and try to participate, if you can.  If you can’t, spread the word via social media so that others might be able to join in.

Become a part of Handprints Across America; simply print out a flier, and take a picture of you holding that flier near a landmark in your area.  Submit it to be a part of the “Handprints Across America Gallery”.

Become a part of Handprints on the Hill, an effort to let our Legislators know that we insist they do not lose sight of Rare Disease sufferers in the oncoming healthcare policy changes.  This is simply a quick email to your Senator or Representative.

Please, do what you can to share the story of those who suffer with Rare Diseases.

Mr. Happy and Mr. Charm will smile at you if you do!

What are you going to do to spread the word today?