Susannah Fox

Author, "Rebel Health: A Field Guide to the Patient-Led Revolution in Medical Care" (@MITPress 2024) She/her. SusannahRFox on bluesky &🧵& insta & gmail

[Susannah Fox @SusannahFox]

If you are looking for blue skies, you won’t find them in DC these days, but you will find me on bluesky as SusannahRFox

[Susannah Fox @SusannahFox]

@patrickc Another example of Reddit supplying "good enough" info: https://t.co/eSBRC3lXi7 (since it's paywalled, here's my write-up: https://t.co/obE8XQBLIC

[Susannah Fox @SusannahFox]

@patrickc Reddit shines when people need quick answers to questions they may not want to ask publicly, like STDs. And it turns out the info they get is quite good: https://t.co/Mn5T02DvfW

[Susannah Fox @SusannahFox]

@patrickc Yes! I wrote a field guide to the patient-led revolution in medical care as a way to shine a spotlight on this #PeerHealthAdvice -> scientific progress phenomenon: https://t.co/UykAQvvIUZ

[Jessica McCann @JMcCannWriter]

Check out my favorite #historicalnovels about ordinary people overcoming extraordinary obstacles via @Shepherd_books. #histnov #fiction #justread #inspiration #motivationMonday
https://t.co/FR9fsHlmAQ

[nature @Nature]

Vaccines have granted families in wealthy countries the luxury of forgetting what measles, polio, rubella, and other preventable diseases are like.

We're looking at how many millions of lives vaccines have saved.

Read the full story: https://t.co/anNTCi3cfq

[SSRS @ssrs_research]

63% of adults living in #raredisease households have, in the past year, seen a doctor or other health care provider, online or via a telehealth appointment. Study conducted by SSRS for @SusannahFox, @ArchangelsMe & Association on Aging in NY.
https://t.co/UcC9uFUgW1

[SSRS @ssrs_research]

📢#RareDisease is NOT rare. 📢New national survey finds 8% of U.S. households are directly affected by rare disease. SSRS is proud to work w/ @SusannahFox , @ArchangelsMe & the Association on Aging in NY on this study: https://t.co/zlk5TqjpiS
#RareDiseaseDay2025

[Susannah Fox @SusannahFox]

.@NIH + @US_FDA canceling their #RareDiseaseDay event was a punch in the gut for a community that is too often dismissed or forgotten. Thanks to @isabellacueto for sharing our new research & my disappointment https://t.co/ATEFJFKUXp

[Susannah Fox @SusannahFox]

50% of people living in a #RareDisease household have, in the past year, gone online to find other people who might have health concerns similar to their own.

Of those, 8 in 10 were successful in finding #PeerHealthAdvice
https://t.co/fBE2gzRTG4

[SSRS @ssrs_research]

View the findings from the first probability-based national survey to measure the #raredisease population. SSRS is proud to work w/@SusannahFox , @ArchangelsMe & The Association on Aging in New York to bring awareness to this important research: https://t.co/zlk5TqiRtk

[Susannah Fox @SusannahFox]

This is the first probability-based national survey measuring the rare disease and undiagnosed illness population.

Grateful to @ssrs_research + @ArchangelsMe + Association on Aging in New York for their partnership.

[Susannah Fox @SusannahFox]

NEW SURVEY: 15% of U.S. households are affected by rare disease or an undiagnosed illness. Their lives are characterized by extreme stress, often matched by their resourcefulness.
https://t.co/fBE2gzRTG4

[Susannah Fox @SusannahFox]

Peer advice from a fed, for other feds: A guide to using Signal for government workers https://t.co/lirUeFnidf

[Susannah Fox @SusannahFox]

@chrissyfarr Late to this thread but for future reference: Shannon Lantzy https://t.co/Q9besFig03

[Susannah Fox @SusannahFox]

@PearlF @BreakthroughT1D @BeyondType1 Thank you! She’s all set!!

[Susannah Fox @SusannahFox]

UPDATE: Thanks to the diabetes community for coming through. Brianna is on her way to pick up a cartridge and has two back-up contacts if that falls through (including one person who works for Tandem)

[Susannah Fox @SusannahFox]

Long shot request for help: my friend Brianna is visiting Boston and forgot her Tandem mobi pump cartridges at home. No one can ship before Monday afternoon. Is there anyone anywhere in driving distance she can get one from today? #WeAreNotWaiting #DOC

[Susannah Fox @SusannahFox]

@abrewi3010 She's all set! A whirlwind of generosity. Head spinning from all the nice messages I got offering to help.

[Susannah Fox @SusannahFox]

@takmad 🥰

[Susannah Fox @SusannahFox]

If you are looking for blue skies, you won’t find them in DC these days, but you will find me on bluesky as SusannahRFox