Thanks to @epatientdave.bsky.social I am adding Flok to my ongoing list of patient-, survivor-, caregiver-led innovations. Flok is both a community for people with inherited metabolic disorders AND a research platform: flok.org

"When you speak up, there is a chance you move the needle, and your courageous actions can compound to create greater institutional courage." - Resa E. Lewiss, MD www.insidehighered.com/opinion/care...

Boredom and anger are a potent mix. Especially when a chemist is stuck at home with a problem she knows she can solve. A dose of inspiration: susannahfox.com/2026/03/20/w...

The news is terrible so here's a sunflower growing against all odds at the top of a mountain near Santa Barbara, CA 🌻

The videocast of Rare Disease Day at NIH is now available. My pick: session on how AI can be leveraged in rare disease clinical care starts around 2:15 videocast.nih.gov/watch/8ada3c...

My favorite annual symposium, Rare Disease Day at NIH, will be livestreamed: videocast.nih.gov/event-calendar

Loved this Freakonomics episode about repurposing drugs to treat rare diseases: freakonomics.com/podcast/are-...

En cette dernière semaine du mois de sensibilisation aux maladies rares, je tiens à rendre hommage à la force incroyable des personnes qui en sont atteintes. 🦓👊 #ZebraStrong #ShowYourRare

Rare Disease Week is a chance for patients, advocates, scientists, clinicians, & policymakers to learn from each other about how to build solutions on the frontiers of medicine. Events happening this week...

"When you imagine the consumer as a patient, opacity feels predatory. When you imagine the consumer as an employer, opacity can feel efficient." - Alec Wade Ginsberg, PharmD, RPh (aka Drugstore Cowboy) drugstorecowboy.com/p/ali-frazie...

A growing movement seeks to ensure all clinicians are equipped to care for older adults. Learn more about the push for universal #geriatrics training. ja.ma/3YNe3g5

Most Americans say government has a responsibility to ensure health care coverage: https://pewrsr.ch/495emca

Digging into TROUBLE MAKER by @cktroublemaker.bsky.social - had to get the hardback after listening to her description of photos on the “He’s Just…” podcast w Jules Douge

Publication day today! Perfect timing for this wonderful excerpt in Town & Country: www.townandcountrymag.com/leisure/arts...

So proud of my dear friend Sam for writing this. So furious he has to go through it. www.nytimes.com/2025/11/11/o...

The power of lies. The power of doubtmongering. Misinformation kills. The decrease in confidence in the (much researched, safe & tremendously effective) MMR vaccine...?👇 www.annenbergpublicpolicycenter.org/public-not-h... via @asc.upenn.edu

From social media platforms to gaming communities, digital life surrounds adolescent boys. To better understand the impact of this digital lifestyle, Common Sense surveyed more than 1,000 U.S. boys ages 11–17 on the SSRS Opinion Panel. www.commonsensemedia.org/research/boy...

"Question: what HAPPENS when you stand your ground and tell the hospital it’s not safe for my father to be sent home? The forces pushing for discharge can be economic, and that’s a spine-stiffener for some hospitals." - @epatientdave.bsky.social susannahfox.com/2025/10/22/c...

I have been traveling and today I present to you...the thing I saw in the Frankfurt airport. Is it efficient? Undeniably. Does it probably work better than the normal way? Oh certainly. Produce less of a mess? Probably? But the existence of Condiment Udders gives me a deep, aghast disquiet.

If you are a caregiver, learn these magic words: “It is not safe for my loved one to return home.” More peer health advice: susannahfox.com/2025/10/22/c...

Sunday morning read: www.npr.org/2025/10/18/n...

1+ million clinical trials are conducted annually. A shocking few ask patients (or even clinicians) for input on physical, economic, and psychological burdens, much less the questions they hope to answer. What happens? Failure. Waste. What can be done? Read: susannahfox.com/2025/10/16/p...

There's precedent for patients demanding - and winning - access to a drug that saved them in a clinical trial: Gleevec. I hope patients win here, too.

Caregiving in America: While caregiving is more prevalent among older adults, a full quarter (27%) of 18- to 29-year-olds report providing unpaid care to a friend or loved one. The average age of caregivers in the U.S. is 50. susannahfox.com/2025/09/25/c...

What an honour to have our book on HIV and COVID nominated for the Foundation of Sociology of Health and Illness with such amazing books including the fab Selling Immunity! @bsa-medsoc.bsky.social @nagingtonuom.bsky.social

Peer support is powerful: "We were talking about, “What’s the thing that’s keeping you up at night right now?” By us saying them, it allowed for (others to say), “Yeah, I’m dealing with that too.” Then you can collaborate on it." www.nytimes.com/athletic/659...

🌻

At the recent Moebius Syndrome Foundation conference, Kathleen Bogart, PhD, led a discussion about ableism and asked, "How would our world be different if everyone had Moebius?" A child spoke up first: "People would be kinder to each other." susannahfox.com/2025/08/29/w...

Mental Health Tech Isn’t Reaching Rural Youth, by Ben Miller open.substack.com/pub/mentalhe...

Jill Dopf Viles died one month before her book, MANUFACTURING MY MIRACLE, was released so I'm doing what I can to lift up her incredible story susannahfox.com/2025/08/15/j...

Velvet Queen sunflower

Potential, cracking open

What do you do when clinicians dismiss your concerns? Frans Frielink dug into the medical literature, talked with other patients, and made the connections nobody else saw. Great #RebelHealth story: globalliver.org/from-patient...

AI Stepped In Where the System Stepped Out substack.com/inbox/post/1...

"One of the biggest challenges is that not only are you learning to keep yourself alive, but you are also having to educate everyone around you" - Alex Durussel-Baker of Diabetes by Design. To combat misinformation, she started subverting famous designs to trick people into learning about diabetes.

So excited to see these beautiful, useful resources in the world! I just backed Type 1 Diabetes Companion Cards on @kickstarter.com www.kickstarter.com/projects/884...

I collect examples of patient-, survivor-, caregiver-led innovations. Please let me know if you have one to add to my list: susannahfox.com/patient-led-...

If people's needs are not being met by mainstream health care and they have the means to create their own solutions, they will. Example: citizen-scientists found that psychedelics work to interrupt a cluster headache and prevent further episodes susannahfox.com/2025/06/27/w...

Extraordinary peer-to-peer health care story: "Brazilian women had made a discovery that allowed them to safely have abortions at home, despite the country's abortion restrictions. That discovery eventually spread across the globe." www.npr.org/2026/01/01/1...

Be sure to sit down with @nhannahjones.bsky.social’s latest piece in the NYT magazine. It’s a sobering reality that we should be shouting from the rooftops. (Gift link) www.nytimes.com/2025/06/27/m...

"To seek treatment and stick with it, Sturdevant understood, people had to have basic needs like food and housing met and, as importantly, a sense of belonging and empowerment."

Atul Butte died yesterday. The world lost a giant. A big bear of a man. With a huge smile. With love for everyone. With energy that could power a room. I loved everything about Atul. I loved how he was always happy. I loved how excited he was about science and helping people.

"All the data in the world will not make a difference, unless there are people ready to use it." — Atul Butte, MD, PHD, FACMI 2024 Morris F. Collen Award Winner

There are people who would love to help you, if only they knew how to find you. Today's example: Jill and Carrie, moms of kids with a rare ankle joint disorder, connecting online susannahfox.com/2021/10/04/c...

Colon cancer recurrence and deaths cut 28% by simple exercise, trial finds arstechnica.com/health/2025/...

On every #MemorialDay, we remember the Americans who have died during their military service to our nation since 1776 by flying 🇺🇸, laying flowers at graves, & holding parades.

It’s here! ORDERS OPEN! A #transgender rights history about #LGBTQ+ standing up to Nazis in the shadow of the Third Reich! Hirschfeld’s Institute and the lives of #trans patients proving that joy + life lived as your authentic self is an act of radical #resistance. 🧪🗃️📚🏳️‍⚧️ bookshop.org/p/books/the-...

“it would also mark the first time in the history of SNAP that the federal government would no longer ensure children in every state have access to food benefits” www.cnbc.com/2025/05/21/s...

The C in Trump’s CFPB stands for Corporate not Consumer. Gift link: www.nytimes.com/2025/05/21/o...

Patients who dread doing medication injections can turn to peers for emotional support. I remember hearing about a group of patients who met online daily to do their shots together, psyching each other up. Practical tips are also key: susannahfox.com/2022/01/06/c...