Dr. Robert M. Califf Califf an article by science writer Ed Yong in The Atlantic: “Technological solutions also tend to rise into society’s penthouses, while epidemics seep into its cracks.” #NORDSummit 3/

"Researchers often think they know the most meaningful endpoint, but that can be different for patients as a whole, but also for individuals within your community. Understanding the patient perspective is the first step." - Heidi Bjornson-Pennell, Chan Zuckerberg Initiative #NORDSummit

"Remove the 'I know what's best' and lay out all the options for families to make the best decisions." - Sarita Edwards (The E.WE Foundation) speaking with our panelists about how healthcare providers can foster open communication with patients and families. #familyengagement

"People get to be angry. Our job is to be as thoughtful as possible and normalize that this process can be terrifying." - Jessica Dallman (Natural Wisdom Counseling) speaking about how #healthcare providers can support patients and families when delivering #raredisease diagnoses.

Fact: ALS caregivers typically don't take care of their own health. They don't do annual checkups, they don't have their own concerns addressed they don't go to the dentist, ... You get the picture. 1/

Got hockey? It’s gonna be a GREAT Saturday. Check out this action-packed event all benefitting rare disease. This Saturday the fun lasts all day. KIF1A.ORG, Global Genes, #RareAsOne. If any org wants to spread awareness and have a table at the event, come on out! All communities

Grateful for the rare disease warriors in the space who continue to be the voice of change for so many. ♥️

What is a myth or misconception about living with a #RareDisease or #ChronicIllness that you still see spread? Let's combat the myths right here.

Two years ago @CBSSundayMorning came to our house to talk about the ALS movement. This summer, they came back to talk about our success, our new projects and our lives. Tomorrow morning Lee Cowan’s piece will air as part of CBS Sunday Morning. I truly hope you will watch it!

Registration is open for our #FDARareDiseaseDay event on March 1. Join us to hear from experts on empowering patients and health care professionals with key information and working to advance medical products for rare diseases. fda.gov/news-events/fd…

💰GIVEAWAY DAY 8💰 Is there any better gift than CASH?? For a final giveaway we’re adding $250 to one lucky winner’s Cash Back balance 🤑 To enter: -Follow Rakuten on X -Retweet this post -Tag up to 5 friends in the replies (1 reply = 1 entry)

Love the willingness to listen to & learn from #raredisease community—> “More often than not, patient groups are teaching us,” says Jodi Rutter of NCATS at EveryLife Foundation Community Congress

📣 To WIN a FREE OCEANFRONT 2 Room Suite May 2nd-May 6th, 4 nights: 1. FOLLOW us on X. 2. Re-Tweet as many Adventurer Tweets as you want 😉. 3. LIKE this Tweet. Wildwood 365 Wildwoodboardwalk Watch the Tramcar Please #wildwoodnj #nj #wildwoodnewjersey #wildwood365 Rules next Tweet

#SCN2A Fact of the Day Knowledge is power, & sharing these insights, we can create a more informed & supportive community. Read, learn, & share because awareness is the first step towards understanding & change #SCN2ADay24 #SCN2AAwareness #GlobalAdvocacy #cureSCN2A #HopeForACure

Enormously proud and honored to do this important work. ❤️

.National Organization for Rare Disorders (NORD) to host a webinar for parents & other caregivers of teens with #RareDiseases on February 29 at 7-8pm ET which will include mindfulness exercises plus discussions of grief, radical acceptance, boundaries & self-advocacy rarediseases.zoom.us/meeting/regist…. #RareDiseaseDay

Don’t let anyone or anything stop you from making your voice heard in this election. If you have any questions or concerns, call a voter protection hotline. These folks are standing by to make sure your vote is counted. So make sure you vote! votesaveamerica.com

We're looking for a talented scientist 👩‍🔬👨‍🔬to join our group St. Jude Research! Help us develop/characterize #stemcell/#organoid models of #raredisease #epilepsy disorders. 🧠🧬🧠🧬 Details below - join us! talent.stjude.org/careers/jobs/J…

Each week, we share the stories of extraordinary individuals whose leadership, service, and dedication strengthen the fabric of our community. This morning, I stood on the floor of the House to honor the life and legacy of a remarkable leader, advocate, and fighter—a true