Here's the full list, recently re-checked, spruced up, and ready to inspire you to start your own org, invest in one of these amazing companies, or otherwise contribute to the patient-led revolution: susannahfox.com/patient-led-...
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...
A yellow sunflower growing in an unlikely spot -- the extremely dry rocky side of a mountain with little vegetation nearby.
Closer picture of the unlikely sunflower growing in dry, rocky soil
The news is terrible so here's a sunflower growing against all odds at the top of a mountain near Santa Barbara, CA 🌻
If you have time for more, start the video at 2:00 and watch Lindsay Guentzel call on us to defend science, attract top talent (including from outside the U.S.), and continue funding both care and research in the best interests of our communities. She does not mince words.
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...
Here's the agenda for Rare Disease Day NIH, which will run from 9am-5pm Eastern: ncats.nih.gov/sites/defaul...
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-...
Texte blanc sur fond noir "Forte comme un zèbre" avec un petit zèbre style cartoon et le logo de Ma vie de zèbre en petit dans le coin inférieur droit.
Texte blanc sur fond noir "Fort comme un zèbre" avec un petit zèbre style cartoon et le logo de Ma vie de zèbre en petit dans le coin inférieur droit.
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
15% of unpaid caregivers nationally live in rural areas (that's roughly 14 million people) - @ssrsresearch.bsky.social ssrs.com/insights/wil...
Rare disease households are likely to be caregiver households: 55% of adults living in rare disease households say that they provided unpaid care to a friend or family member who needs assistance in the past 12 months
susannahfox.com/2026/02/20/c...
8% of U.S. adults say they or someone they live with has ever been told by a doctor or other health professional that they have a rare disease (defined as one affecting fewer than 200,000 people in the U.S.) susannahfox.com/rare-disease...
#RareDiseaseDay at NIH will be held on Friday, Feb. 27, 2026
ncats.nih.gov/news-events/...
#RAREDC2026 is a Congressional lobbying program of the EveryLife Foundation for Rare Diseases being held Feb. 24-26, 2026
everylifefoundation.org/rare-advocat...
FDA #RareDiseaseDay will be held on Monday, Feb. 23, 2026
www.fda.gov/news-events/...
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...
"Healthcare conversations stay abstract because abstraction protects incumbents. Complexity diffuses accountability. When no one can clearly explain how money moves, no one can be held responsible for where it ends up." - another quote from Drugstore Cowboy, Alec Wade Ginsberg, PharmD, RPh
"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...
Hello! Curious if you go to the conferences. It's always a highlight for me when I can make it (even tho I'm not strictly a member of the community). So much warmth and fellow-feeling
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
Book cover for the American Way of Death by Jessica Mitford
Yellow piece of paper with text: Welcome to Powell’s Books! Handwritten notes about the journalism section
Book cover for Trouble Maker by Carla Kaplan
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
Yes, I do this! And as a survey researcher I try to include free-text, no-limit boxes and love when people give me feedback on the questions we ask
