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 Rare Disease Day US 2013

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medmisfit
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PostSubject: Rare Disease Day US 2013   Wed Feb 13, 2013 4:27 pm

Yes, it's that time of year again and we're asking for your support. EURORDIS sponsors this international event and last year 63 countries/regions participated in raising awareness for rare diseases. The theme this year is "Rare Disorders Without Borders". They're encouraging policy makers and practitioners to remove the borders..to share information and resources in an effort to find common solutions for these rare diseases (including PTC/IH). We've made great strides, but still have a long way to go..there are 193 countries that participate in the United Nations and 196 recognized around the world.

I encourage you to visit www.rarediseaseday.org and find ways to raise awareness in your community.

Send in a picture of you or with family, friends or colleagues, joining and raising your hands in solidarity for people living with rare diseases!
www.rarediseaseday.org/yourstory/joinhands.
Remember to specify the location and the country where the photo was taken!

Your picture will be displayed in the photo gallery on their website.

Whether you are at home with your family, 10 people in an office, 100 people at a conference or 1,000 people at a public gathering: JOIN AND RAISE YOUR HANDS to show your solidarity with rare disease patients around the world! Help show that we are all mobilised for people living with rare diseases and that there are no borders with rare disorders!

This symbolic gesture can happen before February 28 or be part of the activities you have planned for Rare Disease Day.

See pictures of other people around the world. A worldwide show of solidarity for Rare Disease Day is displayed in our Flickr Photostream.
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medmisfit
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PostSubject: Rare Disease Day US 2013   Wed Feb 13, 2013 5:20 pm

We spend so much of our lives feeling isolated and alone..this is our chance to speak out and raise awareness for PTC/IH and other rare diseases. You really can make a difference in just minutes.. Lundbeck is donating $1 a click to NORD's general research fund again this year. All you have to do is go to http://rarediseaseday.us/ and click the "Raise Your Hand" button. You can even download the button to your blog or site. I encourage you check out the site and find ways to get involved.. "ALONE WE ARE RARE. TOGETHER WE ARE STRONG."
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hunterofangels
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PostSubject: Re: Rare Disease Day US 2013   Fri Feb 15, 2013 9:21 pm

Feel Free to post this on FB, or make it into your cover picture. It was made by myself this year for IH Awareness!

<3 Crissy/hunterofangels



https://sphotos-a.xx.fbcdn.net/hphotos-ash4/404451_415918475168751_708751412_n.jpg
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