2,118 followers
"If we wanted more research on my rare mutation & other #cysticfibrosis orphan mutations, it was up to us to get it" http://t.co/TMXURDCg7n
1,921 followers
"If we wanted more research on my rare mutation & other #cysticfibrosis orphan mutations, it was up to us to get it" http://t.co/TMXURDCg7n
98 followers
Sharing an inspiring article from one of the families in FC- Emily's Entourage -... http://t.co/cMEk3xlkeb
4,308 followers
What if we let patients use their stories & personal stake to fundraise for research on their disease? http://t.co/husPS5nt4t #whatifhc
3,623 followers
What if we let patients use their stories & personal stake to fundraise for research on their disease? http://t.co/husPS5nt4t #whatifhc
3,299 followers
What if we let patients use their stories & personal stake to fundraise for research on their disease? http://t.co/husPS5nt4t #whatifhc
1,921 followers
What if we let patients use their stories & personal stake to fundraise for research on their disease? http://t.co/husPS5nt4t #whatifhc
75 followers
"I am a rarity among the rare, an orphan of an orphan disease." We need action- NOW! http://t.co/nqvpb20zHx @EmsEntourage4CF #CysticFibrosis
1,921 followers
"Emily’s Entourage assumed a brand-new role in the clinical research ecosystem." Groundbreaking stuff- all bc of YOU. http://t.co/u2D5LwFVyi
2,031 followers
"Emily’s Entourage assumed a brand-new role in the clinical research ecosystem." Groundbreaking stuff- all bc of YOU. http://t.co/u2D5LwFVyi
2,895 followers
Great open access article by @emilykg1 about patient's new central role in research http://t.co/bMnVbrOAF6 / ht @McDawg
639 followers
Great open access article by @emilykg1 about patient's new central role in research http://t.co/bMnVbrOAF6 / ht @McDawg
4,312 followers
Couldn't write ab patient's new central role in research & not let them see. Fought hard for #openaccess & won! http://t.co/JQwTvAb93J #s4pm
1,626 followers
Great open access article by @emilykg1 about patient's new central role in research http://t.co/bMnVbrOAF6 / ht @McDawg
2,119 followers
Great open access article by @emilykg1 about patient's new central role in research http://t.co/bMnVbrOAF6 / ht @McDawg
7,524 followers
Couldn't write ab patient's new central role in research & not let them see. Fought hard for #openaccess & won! http://t.co/JQwTvAb93J #s4pm
2,118 followers
How #raredisease patients are changing the research paradigm as citizen scientists & research drivers: http://t.co/Qb1wtqVthl
3,430 followers
Read @emilykg1's article in @JournalGIM: A lesson in #participatoryresearch for a rare mutation of #CysticFibrosis http://t.co/unVZvpmSEv
4,374 followers
MT @emilykg1 How #raredisease patients are changing #research paradigm as citizen scientists & research drivers http://t.co/L8ZArcaHDQ #CBPR
1,921 followers
Read @emilykg1's article in @JournalGIM: A lesson in #participatoryresearch for a rare mutation of #CysticFibrosis http://t.co/unVZvpmSEv
1,499 followers
Read @emilykg1's article in @JournalGIM: A lesson in #participatoryresearch for a rare mutation of #CysticFibrosis http://t.co/unVZvpmSEv
1,921 followers
How #raredisease patients are changing the research paradigm as citizen scientists & research drivers: http://t.co/Qb1wtqVthl
1,035 followers
Major nerd alert, but totally psyched to see my article on #participatoryresearch published in JGIM: http://t.co/Qb1wtqVthl #cysticfibrosis
1,921 followers
Major nerd alert, but totally psyched to see my article on #participatoryresearch published in JGIM: http://t.co/Qb1wtqVthl #cysticfibrosis