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We spent today sharing our favorite episodes. #hcldr #RareDiseaseDay2023

Adam Johnson - DadVocate #hcldr

Thank you #hcldr! It's been an inspiring chat and an inspiring day!

Amazing news for our friends in the FA community!

When patient advocacy groups partner with drug makers, awesome things can happen. Patient groups will always be closer to community members and with it a symbiotic relationship can develop. This is the kind of thing leadership development programs need to teach inside pharma.

Twice now I’ve heard #patientengagement referred to as “fluffy stuff” 😡 The time ⏰ and money 💰 we will save from solutions that are co-designed with and led by #patients which reduce study delays and increase retention will not be “fluffy”, I guarantee it 💪 #clinicalresearch

It's been awhile since we've been on the road, what conferences should Salem Oaks hit this year? Any smaller ones that we might not have heard of? #hcldr

Apparently we made this account 5 years ago. That means we also just passed 5 years as a company! #MyTwitterAnniversary

Curious about how the 21st Century Cures Act will impact your organization? You'll enjoy our interview with Micky Tripathi, National Coordinator for Health IT at HHS. Watch the interview here: bit.ly/3wuUefm @ONC_HealthIT #HITSM

In honor of International Women’s Day, let’s share leaders in #digitalhealth the industry should be tracking! I’ll start… Joy Rios Shereese Maynard, MS; MBA Effie Parks Enlightening Results 💡 💬Jen Horonjeff | #askpatients Ashley Dauwer Jane Sarasohn-Kahn @gnayyar @healthprivacy Vivian Neilley Lygeia Ricciardi @MakeMyDana

After some rapid fire recording we have a handful of episodes in the works! Follow us wherever you listen to podcasts to be notified when a new episode is available. (It should be every other Thursday going forward, but being a rare parent can get unpredictable.) #RareDisease

We're always looking for new guests, if you're the parent of a child with a rare disease and would like to tell your family's story send us a DM. #RareDisease #rareis

Check out my latest article: The Mighty Mouth Goes Quiet, Casey Quinlan, Mashup 2021-22 linkedin.com/pulse/mighty-m… via LinkedIn

We're so excited to share our new episode with you. Susan Geoghegan is an amazing mom of two rare babies given the challenge in life of Mitochondrial Disease effecting the FBXL4 gene. raisingrare.fm/episodes/susan…

Our new episode is available now. raisingrare.fm/episodes/patri…

Coming soon... Please follow our friends Raising Rare who will feature a #cystinosis family on an upcoming podcast. player.captivate.fm/episode/e3bde2… #RareDisease #CystinosisAware

A new episode is available now! raisingrare.fm/episodes/terry…

#HCLDR friends, there will be a discussion forum, just saying.