brothers

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Thursday, February 28, 2013

International Rare Disease Day 2013

Today is International Rare Disease Day. There are 7,000 rare diseases. 1 in 10 people have a rare disease. 50% of those affected are children. 30% of them won't make it the the age of 5. Yet funding for rare disease research and treatments is difficult because of the size of the market.

How can you help? Please call your congressional representatives NOW and urge them to end the sequester which will result in drastic cuts to NIH research. The sequester will literally kill children and it's impact will be felt for years. Please do this for Ethan and all of the children like him.


NIH Director, Senator Mikulski Warn of Sequester's Impact on Biomedical Research
http://news.sciencemag.org/scienceinsider/2013/02/nih-director-senator-mikulski-wa.html

The sequester and cuts to NIH research funding is not solely a U.S. issue.  Medical research and understanding is a multinational endeavor. The drastic $1.5 billion cut that will hit NIH will have a chilling impact on research and medical advances worldwide.  NIH funded advances that might have happened in the United States won't take place <===> international researchers won't be able to build on those discoveries <===> U.S. researchers won't be able to pick up and develop additional research based on those findings.

If the sequester will slow a generation of research in the United States and other developed countries, it will have a multigenerational impact on sick people in the developing world.  When cutting edge treatments and cures are developed in first world countries, they can take years and, in many cases, decades to filter out into lesser developed countries.

In summary, taking a chainsaw to the federal budget through the sequester will kill children and it may even kill Ethan.  Please call your congressional representatives today and tell them to end this disgraceful abdication of their responsibilities and instead to begin a rational, sustainable long-term fiscal reform effort.