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Ed__40

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1 reviews

Review for Cystic Fibrosis Research Inc, Palo Alto, CA, USA

Rating: 5 stars  

I have been a CFRI member for 30+ years and have witnessed the care and support it provides to the CF Community.

Their publication, "CFRI Community," published tri-annually features articles about the latest developments in CD medication, treatment protocols, life-stories about living with CF, updates on sponsored research.

I've attended many of CFRI's annual education conferences featuring experts in all facets of CF, patient panel discussions about coping with CF, focus group sessions addressing specific CF areas in depth, and social events that affirm the power and care of the CF Community.

CFRI's sponsored research has long expanded the basic knowledge about the biology of CF providing the insights that allow the large pharmaceutical companies and research institutions to develop the drugs and protocols that have extended the median CF age from mid-teens when I became involved in 1982 to mid-forties now.

A few years ago, CFRI played a major role in getting the State of California to included CF in the mandated "New Born Screening" program. Early diagnosis is fundamental to living a successful life with CF.

And, because of the large number of CFRI volunteers, all of CFRI's programs are handled by a staff of FIVE people. Efficiency and effectiveness is their benchmark. They never miss!

Role:  Donor