February 28, 2010, is RARE DISEASE DAY BASEL-ZURICH, a series of activities designed to raise awareness among the general public about rare diseases and their impact on people’s lives.

What will be happening?
Throughout the day there will be special celebrity appearances and prizes given away, as well as a children‘s art display. Food vendors will be on site to ensure that the public has healthy eating options. The day’s events will culminate in a symposium featuring researchers, physicians, companies and politicians talking about strengthening the research efforts in Switzerland for rare diseases

For Basel, you can find the details for the pre - event here and about the event here

For Zurich, the details are here

Where's the money going?
All funds raised by RARE DISEASE DAY BASEL-ZURICH will be divided evenly among the organizers -- the ACCESS! Association, the Gebert Rüf Foundation and the orphanbiotec Research Foundation -- and used to support rare disease research. (Although industry will be participating in the event, none of the funds raised will go to industry.) This event is taking place under the patronage of the Basel Department of Health and the University of Basel.

Why Rare Disease Day?
It is important to promote greater awareness about rare diseases so that society understands that:

_There are over 7,000 rare diseases
_One in 10 people live with a rare disease
_Over 30 million people live with a rare disease in Europe
_Rare diseases pose a huge social and economic burden on society
_75% of rare diseases affect children and 35% die by the age of five
_Most rare diseases do not have research programs
_Most doctors do not have good means to diagnose rare diseases
_Only 50 rare diseases out of 7,000 have approved treatments in Switzerland
_Physicians, researchers, companies and patients all feel isolated

Need more Information or want to participate?

For a detailed program, please visit Wissen Heilt - Tag der seltenen Krankheiten 2010 (in German language) or PM me

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My blogs: about food and Zurich 1200 fountains

Sounds interesting, good way to raise public awareness. Unfortunately the link in english could not be found.

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One should either be a work of art or wear a work of art.

The naming is slightly unfortunate....constantly reminds me of Fawlty Towers....

Rare Diseases remind me of the lyrics of some very old Stranglers song on album Rattus Novegicus. "Down in the Sewer" I think. A classic album and highly recommended.

BigD

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You make your own luck.

www.shootingthecheese.ch
The place for fun and chat in Switzerland.

Hope both day's go well Lucy, it's a good cause.

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The worm has turned.........

I wonder is having a rare disease is somehow worn as a badge of pride. How obscurely-ill can one be ?

You could cause panic among your colleagues and friends with your exclusive ill-health lifestyle and choice of ailment..

BigD

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You make your own luck.

www.shootingthecheese.ch
The place for fun and chat in Switzerland.

You can obscurelly very very ill....

Rare diseases can include cancer, genetic disorders, neurodegenative syndroms, autoimmune, skin conditions. You name it... and these days you can panick the whole office building by sneezing twice in a row. Personally, I don't believe diseases are badges of honor, whatever they are. I believe if you make your condition a badge of honor, you are not sick enough. Worse thing that can happen to you is that you are sick, and the doctor cannot tell what is wrong with you.

On a separate note, rare diseases can also be known as orphan diseases (the name is not consensual, actually).

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My blogs: about food and Zurich 1200 fountains

I wont be attending for fear of catching a rare disease

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It is ridiculous claiming that video games influence children. If Pac-man affected kids born in the eighties, we should by now have a bunch of teenagers who run around in darkened rooms and eat pills while listening to monotonous electronic music....

You did well... I just got home after the pre-event, and even Mr Lucy says I might have fall very soon with a colditis gravissima

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My blogs: about food and Zurich 1200 fountains

Sounds painful.


I have Consecotaleophobia.

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It is ridiculous claiming that video games influence children. If Pac-man affected kids born in the eighties, we should by now have a bunch of teenagers who run around in darkened rooms and eat pills while listening to monotonous electronic music....