I have the most amazing good luck. 8 years ago, my world came crashing down when my newborn baby was diagnosed with the genetic disease cystic fibrosis. Today, we feel like the most fortunate family in the world because we have Kalydeco! Now my goal is to work toward more personalized research, to help bring the most effective treatment to each and every person living with CF!
Thursday, October 27, 2016
Slides from the first Plenary Session of NACFC 2016. A Cure for All:Leaving No One Behind
The CFF has already produced a wonderful blog that detailing the first Plenary session. Thank you Katherine Tuggle! Here are the slides that correspond with her narrative. Enjoy <3
Keep 'em coming! Specifically would love it CFF is trying to create a process with FDA for rare mutations to try existing meds as they come along until het/hetmin are treated. Need N-1 or some type of in vitro to N-1 process. Today's drugs can be helping more people. And, because today's drugs are $$$$ nobody can afford to try them off label. CFF doesn't like to touch this but it's real and true and can help people today, not in 4-5 years. Help?
Thank you for the information! I was looking for and could not find it. you helped me! I found so many interesting things related to it but not found legitimate information and also found some interesting topic
Keep 'em coming! Specifically would love it CFF is trying to create a process with FDA for rare mutations to try existing meds as they come along until het/hetmin are treated. Need N-1 or some type of in vitro to N-1 process. Today's drugs can be helping more people. And, because today's drugs are $$$$ nobody can afford to try them off label. CFF doesn't like to touch this but it's real and true and can help people today, not in 4-5 years. Help?
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Thank you for the information! I was looking for and could not find it. you helped me! I found so many interesting things related to it but not found legitimate information and also found some interesting topic
ReplyDelete