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

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 😷 She/Her Effie Parks Enlightening Results 💡 💬Jen Horonjeff | #askpatients Ashley Dauwer Jane Sarasohn-Kahn @gnayyar @healthprivacy Vivian Neilley Lygeia Ricciardi Dana Trampas (she/her)

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

Christopher Anselmo you have done it again! This is a very important personal reflection and resource for anyone who faces adversity, but especially those in the #raredisease #community. Thank You! #thankyou #rolemodels #mentors Rare New England Eve…lnkd.in/eSgQDFfD

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…

I got this message today from the latest guest on Raising Rare. Woke up this morning, on my twin's 19th birthday to stumble on my episode! Funny coincidence. hahaha! 😉 You need to hear this story! Rare New England #pinksocks #r…lnkd.in/epc4RJn8 lnkd.in/eiprW9Gj

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

This is a must listen for anyone who has ever searched for a business that knows how to treat people with disabilities well. RareNewEngland

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

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