Jijer
@jijer.bsky.social
Health care worker, rare disease patient, mother of bunnies.
Reposted by Jijer
Reposted by Jijer
"Due to the recent layoffs at NOAA, all members of the External Affairs team were relieved of their duties."
www.noaa.gov/external-aff...
www.noaa.gov/external-aff...
NOAA External Affairs
Thank you for visiting NOAA External Affairs. Due to the recent layoffs at NOAA, all members of the External Affairs team were relieved of their duties. If you need further assistance, please visit NO...
www.noaa.gov
March 3, 2025 at 3:21 PM
"Due to the recent layoffs at NOAA, all members of the External Affairs team were relieved of their duties."
www.noaa.gov/external-aff...
www.noaa.gov/external-aff...
Reposted by Jijer
Marco Rubio was my senator. He and his staff politely listened to me, and their support was vital in getting hammerhead sharks protected in Florida waters.
I was cautiously optimistic that he might maybe be a voice of reason.
Yesterday shattered that.
I was cautiously optimistic that he might maybe be a voice of reason.
Yesterday shattered that.
March 1, 2025 at 1:40 PM
Marco Rubio was my senator. He and his staff politely listened to me, and their support was vital in getting hammerhead sharks protected in Florida waters.
I was cautiously optimistic that he might maybe be a voice of reason.
Yesterday shattered that.
I was cautiously optimistic that he might maybe be a voice of reason.
Yesterday shattered that.
Reposted by Jijer
Regarding #NIH websites, including #RePORTER, #PubMed, #NCBI, being down:
- This appears to be due to an issue with domain-name lookup. The websites are up, the lookup is (partially) broken
- It could be caused by a denial-of-service attack or a misonfiguration
🧵 with explanation and workaround:
- This appears to be due to an issue with domain-name lookup. The websites are up, the lookup is (partially) broken
- It could be caused by a denial-of-service attack or a misonfiguration
🧵 with explanation and workaround:
March 2, 2025 at 3:39 PM
Reposted by Jijer
Elon Musk has shut down a team of tech-savvy civil servants responsible for developing the IRS’s free tax-filing service and improving government websites. As a result, 90 employees were immediately locked out of their devices and informed that their jobs were deemed non-essential.
March 2, 2025 at 2:06 AM
Elon Musk has shut down a team of tech-savvy civil servants responsible for developing the IRS’s free tax-filing service and improving government websites. As a result, 90 employees were immediately locked out of their devices and informed that their jobs were deemed non-essential.
Reposted by Jijer
Reposted by Jijer
Slava Ukraini! 🇺🇦 ✊
February 28, 2025 at 8:13 PM
Slava Ukraini! 🇺🇦 ✊
Reposted by Jijer
Last night, the chapel facade of Magdalen College was lit up ahead of #RareDiseaseDay.
A disease is classed as rare when it affects fewer than 1 in 2000 people and there are over 3.5 million people living with a rare condition in the UK alone.
📷 | @oxfordpaediatrics.bsky.social
A disease is classed as rare when it affects fewer than 1 in 2000 people and there are over 3.5 million people living with a rare condition in the UK alone.
📷 | @oxfordpaediatrics.bsky.social
February 28, 2025 at 10:18 AM
Last night, the chapel facade of Magdalen College was lit up ahead of #RareDiseaseDay.
A disease is classed as rare when it affects fewer than 1 in 2000 people and there are over 3.5 million people living with a rare condition in the UK alone.
📷 | @oxfordpaediatrics.bsky.social
A disease is classed as rare when it affects fewer than 1 in 2000 people and there are over 3.5 million people living with a rare condition in the UK alone.
📷 | @oxfordpaediatrics.bsky.social
Reposted by Jijer
Today is #RareDiseaseDay! Despite the turmoil affecting rare disease research and advocacy this year, rare disease patients won’t let it stop them from raising awareness! @RedShirtsRemastered is streaming now, interviewing patients with autoinflammatory diseases: www.youtube.com/live/E8a5Vz9...
Rare Disease Day 2025 Stream-a-thon Day 2 - This is Rare Disease Day!!
YouTube video by Red Shirts Remastered
www.youtube.com
February 28, 2025 at 5:07 PM
Today is #RareDiseaseDay! Despite the turmoil affecting rare disease research and advocacy this year, rare disease patients won’t let it stop them from raising awareness! @RedShirtsRemastered is streaming now, interviewing patients with autoinflammatory diseases: www.youtube.com/live/E8a5Vz9...
Reposted by Jijer
There was a reason rare disease day occurred at the end of a month featuring an occasional leap day. This is a huge deal and understanding what NIH does (did?) in rare disease research is critical.
FDA, NIH postpone Rare Disease Day without explanation. The move comes a week after the agencies told advocates the event would be held as planned. Hundreds of families have made plans to travel to DC for a week of activities, the FDA/NIH event wld have been a highlight. www.fda.gov/news-events/...
POSTPONED - FDA-NIH Rare Disease Day
FDA-NIH Rare Disease Day 2025 Information
www.fda.gov
February 22, 2025 at 6:45 AM
There was a reason rare disease day occurred at the end of a month featuring an occasional leap day. This is a huge deal and understanding what NIH does (did?) in rare disease research is critical.
Reposted by Jijer
February 28 is Rare Disease Day. It has officially been on the last day of February since 2008. The NIH and FDA have "postponed" their annual event. Because this administration doesn't give a fig about #disability #ChronicIllness #RareDiseases #humanity
www.reuters.com/business/hea...
www.reuters.com/business/hea...
US health agencies postpone rare diseases event in an unusual move
A two-day meeting aimed at raising awareness among policymakers and public about rare diseases scheduled for the end of the month has been postponed, the U.S. Food and Drug Administration's website showed on Friday.
www.reuters.com
February 27, 2025 at 4:20 PM
February 28 is Rare Disease Day. It has officially been on the last day of February since 2008. The NIH and FDA have "postponed" their annual event. Because this administration doesn't give a fig about #disability #ChronicIllness #RareDiseases #humanity
www.reuters.com/business/hea...
www.reuters.com/business/hea...
Reposted by Jijer
"Rare diseases" affect more than 30 million Americans. But RFK, Jr. has "postponed" (without scheduling a future date) the annual two day meeting on this subject co-hosted by the NIH & FDA.
"More than 800 rare disease advocates will already be in D.C. for Rare...
1/4
www.axios.com/2025/02/25/r...
"More than 800 rare disease advocates will already be in D.C. for Rare...
1/4
www.axios.com/2025/02/25/r...
Rare disease meeting gets pushed off by HHS
Individual rare diseases are, by definition, uncommon. But with thousands of rare diseases, they represent a large block of patients.
www.axios.com
February 27, 2025 at 3:03 AM
"Rare diseases" affect more than 30 million Americans. But RFK, Jr. has "postponed" (without scheduling a future date) the annual two day meeting on this subject co-hosted by the NIH & FDA.
"More than 800 rare disease advocates will already be in D.C. for Rare...
1/4
www.axios.com/2025/02/25/r...
"More than 800 rare disease advocates will already be in D.C. for Rare...
1/4
www.axios.com/2025/02/25/r...
Reposted by Jijer
NEW: Per a source, the firings of probationary employees hit NOAA's office of Oceanic and Atmospheric Research (OAR) today. It includes not just newer young scientists but people at the top of their field who have been there for years but were technically probationary for admin/not-relevant reasons.
February 27, 2025 at 9:18 PM
NEW: Per a source, the firings of probationary employees hit NOAA's office of Oceanic and Atmospheric Research (OAR) today. It includes not just newer young scientists but people at the top of their field who have been there for years but were technically probationary for admin/not-relevant reasons.
Reposted by Jijer
BREAKING:
The NIH summer internship program (SIP) has been officially cancelled, across all institutes.
It’s a sad loss for the brightest science students in America, for American science, and for future cures for diseases like cancer and Alzheimer’s. 🧪 1/
The NIH summer internship program (SIP) has been officially cancelled, across all institutes.
It’s a sad loss for the brightest science students in America, for American science, and for future cures for diseases like cancer and Alzheimer’s. 🧪 1/
NIDA has announced it, but all the NIH summer internship programs are likely cancelled.
Sorry college students interested in STEM jobs, sorry high school students looking at science 🧪 careers. Trump and Musk are cancelling your futures.
Sorry college students interested in STEM jobs, sorry high school students looking at science 🧪 careers. Trump and Musk are cancelling your futures.
Another loss for #science & the next generation of researchers. The 28-year running NIDA summer internship program is cancelled for this year.
@altnih4science.bsky.social #SavetheNIH
@altnih4science.bsky.social #SavetheNIH
February 26, 2025 at 10:02 PM
BREAKING:
The NIH summer internship program (SIP) has been officially cancelled, across all institutes.
It’s a sad loss for the brightest science students in America, for American science, and for future cures for diseases like cancer and Alzheimer’s. 🧪 1/
The NIH summer internship program (SIP) has been officially cancelled, across all institutes.
It’s a sad loss for the brightest science students in America, for American science, and for future cures for diseases like cancer and Alzheimer’s. 🧪 1/
As a rare disease patient, I made great friends through patient support groups. We were so excited to meet at the annual FDA-NIH Rare Disease Day tomorrow. But it’s cancelled.
udnf.org/udnf-stateme...
udnf.org/udnf-stateme...
Statement on Rare Disease Day, Research and Funding - UDNF
UDNF Statement on Rare Disease Day 2025 Cancellation, Research Funding, and Policy Impacts on the Ultra-Rare and Undiagnosed Community
udnf.org
February 27, 2025 at 3:10 AM
As a rare disease patient, I made great friends through patient support groups. We were so excited to meet at the annual FDA-NIH Rare Disease Day tomorrow. But it’s cancelled.
udnf.org/udnf-stateme...
udnf.org/udnf-stateme...
Reposted by Jijer
For those with visual impairments, there's also a PDF list of banned books, many of which can be downloaded from BARD (Braille and Audio Reading Download) www.library.ca.gov/wp-content/u...
www.library.ca.gov
February 25, 2025 at 5:38 PM
For those with visual impairments, there's also a PDF list of banned books, many of which can be downloaded from BARD (Braille and Audio Reading Download) www.library.ca.gov/wp-content/u...
Reposted by Jijer
I subsist on Social Security Disability/Medicare/Medicaid/SNAP. Medicaid pays the majority of my medications. Due to my disabilities & chronic illnesses I rely on 38 different medications annually. 1 of my medications for Lupus has slowed the progression of the disease.
Without access I would die.😔
Without access I would die.😔
February 25, 2025 at 9:55 PM
I subsist on Social Security Disability/Medicare/Medicaid/SNAP. Medicaid pays the majority of my medications. Due to my disabilities & chronic illnesses I rely on 38 different medications annually. 1 of my medications for Lupus has slowed the progression of the disease.
Without access I would die.😔
Without access I would die.😔
Reposted by Jijer
A Delta flight appeared to have flipped over at Toronto Pearson International Airport
(photo via KellieMeyerNews)
simpleflying.com/breaking/del...
(photo via KellieMeyerNews)
simpleflying.com/breaking/del...
February 17, 2025 at 8:16 PM
A Delta flight appeared to have flipped over at Toronto Pearson International Airport
(photo via KellieMeyerNews)
simpleflying.com/breaking/del...
(photo via KellieMeyerNews)
simpleflying.com/breaking/del...
Reposted by Jijer
Breaking — All probationary employees at OPM were just fired in a mass phone call.
Acting Director Chuck Ezell told staffers, "I encourage you to use this as an opportunity for your next step forward," per recording I reviewed.
On site staffers were given less than an hour to leave.
Acting Director Chuck Ezell told staffers, "I encourage you to use this as an opportunity for your next step forward," per recording I reviewed.
On site staffers were given less than an hour to leave.
February 13, 2025 at 8:05 PM
Breaking — All probationary employees at OPM were just fired in a mass phone call.
Acting Director Chuck Ezell told staffers, "I encourage you to use this as an opportunity for your next step forward," per recording I reviewed.
On site staffers were given less than an hour to leave.
Acting Director Chuck Ezell told staffers, "I encourage you to use this as an opportunity for your next step forward," per recording I reviewed.
On site staffers were given less than an hour to leave.