As a patient foundation you have already done the work to bring patients together. Now is your chance to get their voices heard by pharmaceutical companies.
Salem, CT
Joined March 2018
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Announcing the Launch of our new subscription based education
The Atlas
Visit salemoaks.com/atlas to register for our kick-off meeting on Thursday, September 28, 2023.
#HCLDR friends, there will be a discussion forum, just saying.
Announcing the Launch of our new subscription based education
The Atlas
Visit salemoaks.com/atlas to register for our kick-off meeting on Thursday, September 28, 2023.
A new episode is available now!
raisingrare.fm/episodes/terr…
Salem Oaks retweeted
Coming soon...
Please follow our friends @Raising_Rare who will feature a #cystinosis family on an upcoming podcast.
player.captivate.fm/episode/…
#RareDisease #CystinosisAware
Salem Oaks retweeted
Our new episode is available now. raisingrare.fm/episodes/patr…
Salem Oaks retweeted
Check out my latest article: The Mighty Mouth Goes Quiet, Casey Quinlan, Mashup 2021-22 linkedin.com/pulse/mighty-mo… via @LinkedIn
Salem Oaks retweeted
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/susa…
Salem Oaks retweeted
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
Salem Oaks retweeted
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
Salem Oaks retweeted
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
Salem Oaks retweeted
In honor of International Women’s Day, let’s share leaders in #digitalhealth the industry should be tracking! I’ll start…
@askjoyrios @ShereeseMayMba @OnceUponAGene @GraceCordovano @jhoronjeff @amariedauwer @healthythinker @gnayyar @HealthPrivacy @VNeilley @Lygeia @MakeMyDana
Apparently we made this account 5 years ago. That means we also just passed 5 years as a company! #MyTwitterAnniversary
Salem Oaks retweeted
It's been awhile since we've been on the road, what conferences should @SalemOaks hit this year? Any smaller ones that we might not have heard of? #hcldr
Salem Oaks retweeted
We spent today sharing our favorite episodes. #hcldr #RareDiseaseDay2023
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Salem Oaks retweeted
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
Salem Oaks retweeted
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.
Salem Oaks retweeted
Today on @BeLEMSaware Podcast: Jill Pollander, VP of Patient Services at @RareDiseases, shares how you can participate in #RDD2023. Join millions who are elevating awareness for the #raredisease community today. Listen now: lemsaware.com/podcasts #RareDiseaseDay2023
Amazing news for our friends in the FA community!
Reata Pharmaceuticals Announces FDA Approval of SKYCLARYS™ (Omavaloxolone), the First and Only Drug Indicated for Patients with Friedreich’s Ataxia
Click here to read the full press release: reatapharma.com/investors/ne…
