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Wednesday, January 22, 2014

Raise Awareness, Fight for Treatment and Find a Cure.

Alone we can do so little; together we can do so much. —Helen Keller
Helen Keller's words give rare disease patients the strength to carry on.
We have over 8,800 signatures supporting our petition for rare disease research. It is our goal to get 10,000 signatures to present to NIH/NIA. I remain confident that with each signature we are spreading awareness.
February is around the corner, thoughts of our loved ones are in our minds with Valentines Day. But there is another day that comes to mind for rare disease patients everywhere, February 28, 2014 Rare Disease Day. Rare Disease Day signifies the value of patient organizations united together with our voice. We are empowering each other to raise awareness, fight for treatment and ultimately find a cure.  
So today I would like to thank each organization for collaborating with each other for the betterment of the patient. I also would like to thank all the patient communities that have come together from EDS and Sticklers, to FMD and Brain Aneurysms, Marfans there are too many to list. Although we are far from done with our mission we will continue to support and care for each other in years to come. 
Croatian Alliance for Rare Diseases

Orphan Druganaut Blog

I encourage other organizations to get involved and help make a difference for the good of the patient. Today I am reaching out to all rare and genetic disease patient organizations and I am asking you for your support. 
Restoring the study will return hope, continuing the extensive work done over the last 10 years. It will ensure all the progress we have made will not have been in vain and keep us on a path to a cure. 
If the NIH continues with their current plan to end the study it will leave patients and their families without a place to turn for answers and send a message our lives are not worth the investment of finding a cure. Even worse, the samples and results already gathered could be lost, leaving scientists to start over.
Warm Regards,
Kari Ulrich

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