Just dipping our toes into Bluesky. If you have not heard Raising Rare - you have a lot of catching up to do. We talk to parents raising kiddos affected by rare diseases. www.raisingrare.fm/episodes/new...

100th Episode A New Season, A New Era — Raising Rare

100 EPISODES!!! It is hard to believe that over 6 years ago, we started Raising Rare as an experiment. How would people react to following the life of a young family affected by an ultra-rare disease...

raisingrare.fm

We need your help! SPM will have a small but important presence at the upcoming World Orphan Drug Congress. We need representatives at our booth. Contact @ksalemoaks.bsky.social to learn more. You can complimentary passes for full Congress at WODC@participatorymedicine.org #MedSky

Collaboration is the best medicine! 💯 This is the fundamental belief at @participatorymed.bsky.social But we need data to prove the case. And we are building the team to define and collect those data. Watch this interview to learn how we are attacking the challenge.

Society for Participatory Medicine@participatorymed.bsky.social · 6mo ago

We are thrilled that Cait DesRoches, DrPH, MSc, has been appointed Principal Investigator for SPM's signature initiative: the Collaborative Healthcare Action Measurement Platform (CHAMP). @ksalemoaks.bsky.social sat down with @cait-desroches.bsky.social: buff.ly/EuSzT43 #CHAMPindex #Medsky

Check out my latest piece in @hechingerreport.org ! First of many as an OpEd Project Public Voices Fellow

The Hechinger Report@hechingerreport.org · 7mo ago

OPINION: Pathways for future scientists are becoming scarce, threatening a strong and innovative workforce When I was 17, I didn’t know a single scientist. I did not grow up around labs, research universities or people who talked about things like “STEM pathways.” The only reason I am a scientist…

#CHAMPindex #ParticipatoryMedicine #PatientEngagement #CollaborativeHealthcare #SPM #MedSky #PatientsUseAI #AskPatients #PatientExperience #PatientAdvocacy #PatientVoice #LivedExperience

Kevin Freiert@ksalemoaks.bsky.social · 8mo ago

I was thrilled to represent the Society for Participatory Medicine @s4pm.bsky.social at the December @everylifeorg.bsky.social Community Congress. In return for some help with the travel costs, I wrote a short blog. Did you you know SPM offers travel awards to their members? wp.me/p8S1TQ-61e

I was thrilled to represent the Society for Participatory Medicine @s4pm.bsky.social at the December @everylifeorg.bsky.social Community Congress. In return for some help with the travel costs, I wrote a short blog. Did you you know SPM offers travel awards to their members? wp.me/p8S1TQ-61e

I was thrilled to represent the Society for Participatory Medicine @s4pm.bsky.social at the December @everylifeorg.bsky.social Community Congress. In return for some help with the travel costs, I wrote a short blog. Did you you know SPM offers travel awards to their members? wp.me/p8S1TQ-61e

Raising Rare has finished our 6th season. More importantly, one of our founding co-hosts has some big news... Well, big for us at least. Take a few minutes to listen, share, and like. www.raisingrare.fm/episodes/lea...

Leaving a Legacy - Sanath Kumar Ramesh — Raising Rare

Almost 7 years ago, Sanath Kumar Ramesh found out his son had an ultra-rare mutation. GPX4 This began a journey that would force him to grow into a man he never imagined. Part of his journey was this...

raisingrare.fm

Does that mean that the DOW is up by over 727% today (End value/change)?

Kai Ryssdal@kairyssdal.bsky.social · 9mo ago

My brain hurts

My brain hurts

Aaron Rupar@atrupar.com · 9mo ago

FOX: If you cut something by 100%, the cost goes down to 0. If you cut it by 600%, the drug companies are actually paying you LUTNICK: What he's saying is if a drug was $100 and you bring it down to $13, it's down 7 times F: Not a 600% cut L: But it's 700% higher price before. It's down 700% now

Have you heard the latest episode of Raising Rare yet? @medsky.social #participatorymedicine @s4pm.bsky.social @globalgenes.bsky.social @everylifeorg.bsky.social #rarediseases #mentalhealth www.raisingrare.fm/episodes/rar...

Rare Men, Rare Wellness - David Hogan — Raising Rare

How do you tell whether a zebra is male or female? The male doesn’t’ talk about their #raredisease. This can be hard on them. There have been very few places for them to gather to take care of thei...

raisingrare.fm

#nursesareprofessionals

Teresa Doherty@dohertyta.bsky.social · 9mo ago

REad more here #womenshistory #WomenInSTEM #MedSky #NurseSky #HistNursing en.wikipedia.org/wiki/Kathari...

At @s4pm.bsky.social Collaboration is the Best Medicine. Nurses are integral to our vision of healthcare where patients and families are considered equal partners on the care team. Nurses get it! They are trained to notice the subtle changes that could be important. #nursesareprofessionals

NPR@npr.org · 10mo ago

Under new Trump administration rules, students won't be able to borrow as much for medical or nursing school or some other health professions. n.pr/49F5HOn

www.linkedin.com/posts/kevinf...

#pinksocks #caregiving #caregivers #collaborativehealthcare | Kevin Freiert

"Trust is the invisible thread that holds the caregiving relationship together. Without it, even the most well-intentioned care can feel hollow or transactional. But with it, caregiving becomes a powe...

linkedin.com

Back to bluesky after hearing great things. Speaking of hearing great things, have you listened to the latest Raising Rare podcast episode? www.raisingrare.fm/episodes/pla... #parenting #raredisease #GRIN2A @rarediseases.bsky.social @rarediseasesint.bsky.social @rarediseaseday.bsky.social

Plans Change. Dreams Shift. - Mariah Swanson — Raising Rare

“This journey has changed our lives, has reshaped my identity. Plans change, dreams shift. I've had to learn to become more than just a mom.”  Mariah only started this journey earlier this year....

raisingrare.fm

Thank you all for the support this year. Just listening and subscribing helps a lot, now you can also share www.raisingrare.fm by wearing apparel from www.apparel4zebras.etsy.com We have clothing, accessories, totes, and blankets that would make great holiday gifts for the zebras in your life.

#poetry

The Hartford Courant discusses the #raredisease capabilities now available between the JAX Rare Disease Translational Center (#RDTC) and a new whole genome sequencing test at JAX's Advanced Precision Medicine Laboratory: www.courant.com/2023/09/25/c...

A CT lab’s gene test can find more rare diseases. This is what it can do for the ‘diagnostic ody...

The bottom line is to help families “who have been searching for oftentimes years to find the answers,” said Melissa Kelly, clinical laboratory director at the lab.

courant.com

New account for Salem Oaks @salemoaks.bsky.social, if you know me because of my work go follow it too.

We just published a new episode of our podcast Raising Rare. www.raisingrare.fm/episodes/mir... This one might be especially interesting for some of you in the Health Tech space.