Thank you 150 members who "want to hearmore" about our Mutation Guild Project!
http://www.surveygizmo.com/s3/1129460/Genetics-US (survey still open)
CF.com has been about support, education and hopesince 1996.
Privacy has always been important to thiscommunity, especially when Pre-Existing Condition held more sway in the USA.
This has always been a place where you can shareyour stories and read others stories, whether you gave you "realname" or user name.
This is a public place, as outrageous as it was in1996, it is common place today.
Many people have joined the forums...with theirmutations (close to 3000 members.) People did this I am sure to learnmore about the outcomes with these mutations, to find others with the samemutations and to be ready to participate in clinical trials.
Mutations are just a small part of the wholegenome story.
CF mutations exist on the 7th chromosome the CFTRgene.
But the price of the whole genome is coming downdown down...and
scientists and even communities like ours are ableto study much more about our genetics.
What if other genes held more secrets about CF? Like which medications work, or what if other mutations appear? Orwhat if some people with CF can be together?
I think you will agree there are many questions toanswer.
This is the perfect community to stake claimfor ownership and privacy of your own tissues. There is so much to gain by being together and on top of this blossoming situation.
The country that figures out how to create laws around the genome will hold the clouds with lots of silver linings! The UK is on the way...
So thanks lilmac for bringing this important topicup on my last blog!
Imogene
http://www.surveygizmo.com/s3/1129460/Genetics-US (survey still open)
CF.com has been about support, education and hopesince 1996.
Privacy has always been important to thiscommunity, especially when Pre-Existing Condition held more sway in the USA.
This has always been a place where you can shareyour stories and read others stories, whether you gave you "realname" or user name.
This is a public place, as outrageous as it was in1996, it is common place today.
Many people have joined the forums...with theirmutations (close to 3000 members.) People did this I am sure to learnmore about the outcomes with these mutations, to find others with the samemutations and to be ready to participate in clinical trials.
Mutations are just a small part of the wholegenome story.
CF mutations exist on the 7th chromosome the CFTRgene.
But the price of the whole genome is coming downdown down...and
scientists and even communities like ours are ableto study much more about our genetics.
What if other genes held more secrets about CF? Like which medications work, or what if other mutations appear? Orwhat if some people with CF can be together?
I think you will agree there are many questions toanswer.
This is the perfect community to stake claimfor ownership and privacy of your own tissues. There is so much to gain by being together and on top of this blossoming situation.
The country that figures out how to create laws around the genome will hold the clouds with lots of silver linings! The UK is on the way...
So thanks lilmac for bringing this important topicup on my last blog!
Imogene