Natalia Pozuelo
@name-natalia.bsky.social
If anyone has connections with OH senate and DC folks please spread word that Gov DeWine is going to pass bill to eradicate Ohio Rare Disease Advisory Council , a council with no budget & provides advocacy for life saving treatment & access for rare diseases , without this council we have no voice
July 1, 2025 at 8:17 PM
If anyone has connections with OH senate and DC folks please spread word that Gov DeWine is going to pass bill to eradicate Ohio Rare Disease Advisory Council , a council with no budget & provides advocacy for life saving treatment & access for rare diseases , without this council we have no voice
Def didn’t see any of it except on here and substack
March 16, 2025 at 4:38 PM
Def didn’t see any of it except on here and substack
Bookmark to save posts and review later , not pin feature but bookmark please and thank u
March 12, 2025 at 3:07 PM
Bookmark to save posts and review later , not pin feature but bookmark please and thank u
Yes why can’t my state senators email me back for meeting about rare disease as a rare disease legislative advocate with EveryLife Foundation
March 8, 2025 at 3:58 AM
Yes why can’t my state senators email me back for meeting about rare disease as a rare disease legislative advocate with EveryLife Foundation
Thank you Joyce for this
March 6, 2025 at 4:43 PM
Thank you Joyce for this
Also thank you for taking time to answer our questions
March 6, 2025 at 4:42 PM
Also thank you for taking time to answer our questions
How can we make sure the disabled community remains protected during this administration…thank you from fellow @aapd-disability.bsky.social alumni and disability index next gen leader alumni and EveryLife foundation rare disease advocate
March 6, 2025 at 4:41 PM
How can we make sure the disabled community remains protected during this administration…thank you from fellow @aapd-disability.bsky.social alumni and disability index next gen leader alumni and EveryLife foundation rare disease advocate
A life saving bone marrow transplant is only reason I am here today and by cutting services that they are cutting through NIH, FDA, & HHS my future is at stake , my life , my access to treatment
March 5, 2025 at 4:08 AM
A life saving bone marrow transplant is only reason I am here today and by cutting services that they are cutting through NIH, FDA, & HHS my future is at stake , my life , my access to treatment
As someone living with neurological muscular progressive genetic disorder …my livelihood depends on research…& time is precious to provide me more time more life, if they keep cutting these services my livelihood is at stake
Thank you Jaime for your leadership
Thank you Jaime for your leadership
March 5, 2025 at 4:08 AM
As someone living with neurological muscular progressive genetic disorder …my livelihood depends on research…& time is precious to provide me more time more life, if they keep cutting these services my livelihood is at stake
Thank you Jaime for your leadership
Thank you Jaime for your leadership
good for you…this is getting very strange…people aren’t going to realize the guests are distractions before it’s too late
March 5, 2025 at 3:57 AM
good for you…this is getting very strange…people aren’t going to realize the guests are distractions before it’s too late
Agreed …also he seems to be hanging on to the podium for dear life
March 5, 2025 at 3:54 AM
Agreed …also he seems to be hanging on to the podium for dear life
This is getting very uncomfortable the way they stop and clap for every sentence he says…using these guests to turn this into a show…when they aren’t helping the people ….but worried many Americans won’t see past these lies & believe all is going to be fine
March 5, 2025 at 3:36 AM
This is getting very uncomfortable the way they stop and clap for every sentence he says…using these guests to turn this into a show…when they aren’t helping the people ….but worried many Americans won’t see past these lies & believe all is going to be fine
Agreed…the constant getting up to clap for every sentence said is giving 1930s Nazi vibes
March 5, 2025 at 3:33 AM
Agreed…the constant getting up to clap for every sentence said is giving 1930s Nazi vibes
As someone living with a neuro muscular skeletal progressive genetic disorder I appreciate this guest - only future research will save my life ahead
March 5, 2025 at 3:31 AM
As someone living with a neuro muscular skeletal progressive genetic disorder I appreciate this guest - only future research will save my life ahead
Thank you for being our voice during these times
March 5, 2025 at 3:03 AM
Thank you for being our voice during these times
Literally the peanut butter and jelly of Spain that is so good , America has no idea what their missing
February 21, 2025 at 3:06 AM
Literally the peanut butter and jelly of Spain that is so good , America has no idea what their missing